Friday, October 26, 2012

I Ruined My Body

My guilt factor is sky high lately.  What if I hadn't had that surgery, what if I'd had another doctor do the such-and-such surgery, what if I'd had no surgeries at all?  What if I'd factored in my health first?

It's just overwhelming to live in constant pain, pain that's a direct result of (in)fertility treatments.  (Side note:  I feel like an imposter saying "fertility" treatments because I really only went through one medicated treatment cycle). 

When we were TTC, any guilty feelings were centered around what I wasn't doing:  not eating/drinking the correct things, exercising too much or too little.  I shouldn't have eaten that goat cheese! I probably killed my embryo!  Etc.  Or feeling wishing I had started treatments earlier.

I can't stop thinking lately about all the infertility-related choices I've made in the past few years.  I chose the crappy RE to do my initial IF workup.  Since the crappy doc suggested a laparoscopy to see how "messed up" I was inside (his words) and I didn't trust him to do it, I chose an outside endometriosis-specialized physician to do the surgery.  During the lap, the endo guy also did a hysteroscopy and said my septum wasn't large enough to be a fertility issue, and he didn't see any other problems.

Enter the good RE, who eventually found scar tissue in my ute and thought my septum was an issue after all.  Two surgeries later, my life was turned completely upside down by chronic pain.  I don't blame her surgical skills—I blame the damn balloon—but my life changed dramatically on 3/9/12.

I'm trying to forgive myself for everything.  For not seeing the good RE first, for not doing more research before I started having surgeries.  For trusting that any type of hysteroscopic surgery was minor.  After all, I'd had laparoscopic surgery already.  Why would I flinch at something less major than that?  It's like doing injectable IUIs after Clomid ones; eh, not that big a leap.

Now that my TTC chapter is closed, I can look at it as a whole and see the flaws and horror more clearly.  I'm not wrapped up in next steps and cycle days, which is AWESOME, don't get me wrong.  But reflecting on that period of time is rough, and I guess the TTC chapter is being drawn out in a way because I'm still physically feeling the effects of my treatments.

I feel like I've ruined my body.  I mentioned on my last post that I used to run half marathons.  Running was a huge part of my life throughout my 20's.  I ran 5Ks, 10Ks, and half marathons.  Before that, in high school and earlier, I was as dancer.  In my 30's, I took up yoga and practice almost daily.

That's where I was, physically speaking, on 3/9/12:  lean and mean from many hours of yoga.  I felt great when I practiced and was strong enough to do some pretty tough poses.  I was flexible for the first time in my life.

I can't even take a walk now.  I risked my body's wrath today by walking for about 20 min at lunchtime and I'll probably suffer the consequences this weekend.  I feel completely defective and it's embarassing to talk about; how do you tell your coworkers that you can't walk because your pelvic floor muscles are fucked up?  Who wants to say "pelvic" anywhere in the vicinity of work?

My body is mushy now and 5 pounds heavier.  My pants are getting tighter and tighter.  Surprising fact:  if you don't move around at all and keep eating as if you do, you gain weight.  I want to move.  I crave exercise.  I want to stretch and be flexible again and not feel my hamstring clamp up when I put up my leg while shaving.  I've tried stretching; I really have.  It turns out that your pelvic floor muscles are connected to EVERYTHING and hence EVERYTHING hurts to stretch.  Want to stretch out my pinkie finger?  Can't.  Connected to the pelvic floor.  My PT tells me to do what I comfortably can but not to do anything painful at this point, so I'm left with nothing to do except a couple of measly exercises she gave me.

So, to summarize:  my lady parts are fucked up because we tried too hard to get pregnant (see what I mean?  Impossible to talk about without getting into areas all sexual-like).  I hate my body and hate that I ignored the warning signs.  I already had pelvic pain before all the IF shenanigans started.  Why did I screw things up more down there?  Blah.

Hmm, that was all over the place and not at all what I set out to write.  Funny how that works.

I'm tired of the headaches.  TENS helps with them so we're going steady again.  The headaches almost make me feel cross-eyed at moments, like I can't focus for a second because of the intensity.  It's really weird, but I can tell that the headaches are part of the neuropathic pain, and my doc concurred.  It's like the pain comes up from my pelvis (hate that word and must find a new one), through my core and spreads out in my head.  Caffeine and painkillers don't touch it.  Lyrica is pretty much the only thing that works, that and TENS.  I'm going through 9V batteries like a fiend.  It turns out that rechargeable 9Vs aren't as readily available or as high a quality as you might think.

In the interest of ending on a high note, I had a major victory today.  <drumroll> ...I did not cry at a coworker's pregnancy announcement.  I cried at her last one but shrugged off this one like a champ.  It helped that my pregdar went off big-time when I saw her this wasn't her body, it was her smug pregginess.  And I'm sure I will love the upcoming meetings when she will turn work-related conversations into something about her baby. 

But anyway.  No tears!  Victory! :)

Have a great weekend!

Saturday, October 20, 2012

I Never Want to Be Pregnant

Under no circumstances do I want to be pregnant.  I do not want to have an oopsie baby after I adopt. I do not want to have a surprise pregnancy at age 43.  I do not want to do another letrozole cycle.

This does not mean I don't wish things were different with my body.  That I don't wish I had another body without a pain syndrome and uterine issues.  I still long to grow a round belly, feel kicks and punches from a little one inside me.  The desire, the longing, is still there.  But it's like wishing you hadn't broken your arm; it's broken and you have to deal with it.  Maybe you have to stop playing tennis forever.  Maybe the break is so bad it will affect you the rest of your life.  You can spend your time wishing you weren't limited physically or you can adjust your expectations. 

My decision to forever stop TTC didn't happen overnight.  A few weeks after my surgery in March, even though I was still in extreme pain, I was scheduling a 3D sonogram appointment to prepare for my next letrozole cycle.  I was optimistic.  I didn't know this kind of pain syndrome even existed.  Who has heard about pelvic floor muscles unless you've given birth or are 80 years old?  I hadn't been aware of mine.

Needless to say, I had to cancel the 3D sono appointment, which was just one of the many things that has given me pause since March.  If I couldn't schedule it at that point, then when?  The next month?  Three months from now?  (Correct answer is none of the above.)

My thinking shifted gradually.  I'd felt unsure about trying for pregnancy #3, anyway.  Pregnancy #2 ended around 7 weeks last fall.  The chromosomal testing came back normal, and my doctor thought the miscarriage was related to a structural problem with my uterus.  Supposedly the structural issue was fixed by my last (catastrophic) surgery, but who really knows?  Why tempt fate?  Why put myself in the position to lose another baby when my heart has been shattered twice already?

As the months ticked by after the surgery, I stopped planning for my next RE appointment.  I had a brand new, all-consuming shitstorm with that wasn't TTC-related:  chronic pain.  But in spite of that, I started living again.  I ate what I wanted:  suddenly, soy is ok again!  Dairy is not evil!  No need to go gluten/nut/coffee/sugar-free for fostering the ideal environment for baby to stick around!  I didn't know what cycle day I was on.  I didn't cry in the bathroom when my period arrived and then fill my grief with baked goods.  Not TTCing has been one of the most freeing things in the world.

Before The Surgery to End All Surgeries, I'd had difficulty conceiving and two miscarriages, and I hated TTCing.  The IF blogosphere is filled with people like me who keep trying, understandably, for their take-home baby.  Chronic pain is what did me in.

I'm kind of an old pro with intermittent pelvic pain.  I've had horribly painful periods since I was a teenager, which turned out to be endometriosis that was probably contributing to my infertility (huge surprise—not).  But the painful periods were only for a few days a month.

The pain I have now is all the time.

I've never experienced any kind of chronic, day-to-day pain other than run-of-the mill tendinitis or other exercise-related aches.  This is completely new.  If I hadn't gone through infertility and loss, I'd say this is the hardest thing I've ever gone through.  So it's a close third.  The pain tries to shatter me.  Not one aspect of my life is untouched:  my relationships, my job, my sleep.  My sanity.

I've used about 130 hours of sick leave for the pain since March.  I missed my nephew's first birthday party and my niece's summer ballet recital.  My demeanor has been irritable and prickly for the most part, even if at first I appear pleasant.  A smile or pleasant conversation does not mean I'm not in pain or will not suddenly lash out at something.  Or just lose track of what you're saying as I plot my next attempt at pain relief.  My pain level is usually pretty high but I'm trying, trying ever so hard to pretend it doesn't exist.  The irritability is usually unleashed on my husband, and when I immediately apologize and explain that my pain level is really high, he is understanding.  But he doesn't deserve this.

I go to PT weekly and usually have one other doctor's appointment during the week; it's a big time-suck.  At these appointments, I've asked about my prognosis, of course.  My healthcare providers don't like this question because they don't know the answer.  They hem and haw a bit, and say we'll have to wait and see, "ask me again in a few weeks."  The two physicians I've asked are both pelvic pain specialists, and both have predicted that I would "probably" be fine with a pregnancy.  That pregnancy hormones tend to have a calming influence on my syndrome. 

Fine.  But what about the ENTIRE REST OF MY LIFE AFTER THE PREGNANCY?  Will the changes wrought by pregnancy and childbirth wreak havoc on my already fucked-up body?

The physicians haven't given me a real answer for that.  My PT has given it to me straight, though.  She says she's seen it both ways:  some people with my issues have a pregnancy that goes ok and they feel fine afterwards, and some do not.  I didn't ask her to elaborate much because I don't even want to hear about patients who have it worse afterwards; I cannot imagine their pain.

I'm not a risk-taker.  Not that anyone knows statistics for outcomes of women with uterine abnormalities who have undergone surgeries and go on to develop chronic pelvic pain and then go on to have pregnancies, but I've thought a little about what kind of odds I would bet on:  at what odds of worsened pain in the future would I consider getting pregnant again?  What if 50% of women like me felt ok during the pregnancy and then, postpartum and beyond, felt even better than before the pregnancy?  50/50 odds.  No way in hell I'd do it.  What if 90% felt great afterward?  Nope, still wouldn't do it. 

I cannot conceive (pun intended) of a future filled with this kind of pain.  It's been going on for 7 months already and I don't know how I've done it.  People comment on how strong I am to have dealt with this for so long, but I don't feel strong.  I just feel like severe pain.  It's day-to-day living now.  I try not to plan too far in advance.

If I can't find a way to decrease my pain level before I have a child, I cannot be the kind of mom I want to be.  I physically could not handle the sleep deprivation that comes with a newborn; less sleep = more pain.  I would be glued to the couch, not on the floor playing with my baby or walking around to soothe her at night.  I couldn't take her for walks in the stroller or teach her to ride a bike.  I would have trouble attending her soccer games; sitting up for a couple of hours hurts too much.  Worst of all, I could not be the emotionally supportive, stable, fun type of mom I want to be.  It would not be possible.

The decision not to TTC is easier knowing that adoption is a possibility.  But even if adoption wasn't on the table and our remaining option was childfree living, I would have to choose childfree living over TTC.  Why in the world would I choose *possibly* having severe pain the rest of my life?  My (hopefully) future children would be worse off for it, my family and husband would struggle with me, and I would constantly fight the pain demon.

When I started this post, I'd intended to write even more, tell you about how in my previous incarnation, I ran a half marathon at an 8:10 min/mile pace.  Now I can hardly walk a mile once a week.  I'd wanted to tell you that I do still grieve for the loss of my husband's and my biological child, the little blonde boy who looks like his dad.  Also, I could write for days about how you don't know until you've been there what kind of decisions you'd make when you've had pain that reaches an 8 every day, sometimes staying there for hours at a time.  And it goes on for months and months, possibly years.  But I've written enough for now. 

For all of these reasons, I will never pursue pregnancy again.  I love myself too much and won't knowingly put myself in harm's way.  I want more out of life than appointments, pills, and this seemingly endless gnawing, burning pain that is trying to eat me alive.

Friday, October 12, 2012

Singing, Cooking, and...Adopting?

Yesterday I heard something weird:  my voice, singing in the car with the radio.  It happened again today.

It's little things like this, realizing that I haven't sung in the car for months, that make me appreciate how shitty the past few months have been.  But this week has been different.  I think I've turned a corner, guys.

Last week was the worst one, emotionally speaking, in quite a while.  Cried to my pelvic pain doc for 20 minutes on the phone.  Sent tearful emails to my psychiatrist.  Insomnia.

I was still in a really bad place this past Monday, but everything shifted slightly on Monday evening.  I made myself cook dinner and realized the pain had decreased.  Tuesday was even better and I cooked dinner again—shocking.  The relief has continued, which is the longest stretch I've felt better in many months.

For the record, it still sucks.  My TENS unit is keeping me sane; we're going steady again since I overcame some trust issues.  I'm still not doing any physical activity to speak of, but I've at least rejoined my coworkers' lunchtime walking group for a few minutes before I have to turn around.

Not surprisingly, my mood has improved significantly.  Fewer problems sleeping, etc. 

Oh, and I almost forgot to explain what I think is responsible for my improvement:  my physical therapist.  After our initial sessions, I was afraid she was killing me because I felt worse.  Then we figured out it was probably because our initial sessions coincided with my Pill trial (epic fail), so PT was probably not to blame.  I stuck with it, seeing my therapist weekly, and her treatment last week (internal pressure points, if that's not TMI) was a revelation.  My pain was worse for a couple of days, which is to be expected, but then it was better than it'd been in months.

Please cross your fingers with me that this improvement lasts.  I feel like I'm starting to get my life back again and am desperately clinging to it.

In the midst of last week's depression, my husband and I met again with our local adoption resource.  I can't say much more about the resource without divulging my location, but if you want more info, feel free to email me (see my "Contact" tab).

The meeting restored my hope that we can do this, that this can really happen for us.  The couple, who are adoptive parents themselves, gave us tons of information about the adoption process, from first steps to the legal paperwork after the baby is born.  The information on initial steps was key because I've been flailing, not researching anything at all because I've felt too overwhelmed (and, well, consumed by pain).

So, first up is getting fingerprinted.  The couple told us where to go to have it done...we can do this.  I have to keep repeating that to myself.

The hubster is not 100% on the adoption train yet but is game to start the process.  If (or, as I'm telling myself, "once") we commit to adopting, it will help if some of the initial time-consuming steps are out of the way.

I've been telling more people what we've been going through, from infertility to chronic pain to possibly adoption.  Nothing like a TENS unit stuck to my hip to shred any last bit of secrecy.  I've been happy to share more, though.

I am getting a lot of people telling me that adoption is wonderful and, well, you know what's coming: "Who knows, you might get pregnant in the meantime!"  Or that adopting doesn't mean that we can't pursue a bio baby later, since I'm "only" 35 (in my head, it's "35 is so close to death, and maybe I'll grow old and die before I can raise a child!" and that type of hysteria).  I tell people that I'm pretty convinced that a bio baby is out of the question, though, and that we'll be actively preventing pregnancy.  This usually leads to looks of confusion.

I need to write a whole post about why I don't want to pursue getting pregnant ever again, starting with seven months (217 days) of severe pain.  Post will include 2 miscarriages and my desire never to go through that again.  I'm not saying I'm incapable of changing my mind, but with each passing day of pain, and time off from TTC and all the BS that accompanies it, I'm more and more certain.

Monday, October 1, 2012

TENS Love Gone Bad

Let's complain about treatments, shall we?  I'm so tired of them—the endless medications, PT appointments that take a large chunk out of my working day, and my new less-than-awesome TENS unit.

TENS is weird.  At first I raved about it, profusely thanking my dad for sending me his unit and believing it would be life-changing.  Now I'm not so sure.  I think it does have some effect, but I think the initial high from it was actually a result of a good myofascial releasing PT session.  Not that my dad still doesn't deserve thanks.

There are four sticky pads with electrodes that I put on my lower abdomen.  Wires connect these to the unit.  Long wires; part of what makes it unwieldy.  The unit itself can clip to your belt and looks kinda like a pager circa 1995, if pagers then were huge and tan-colored.  It's quite a bit larger than a cell phone. 

I can use the unit at work or when I'm out and about at other places, but people definitely see it.  At first I wore long cardigans that kinda covered it, but made me look like my right hip had a box-shaped tumor.  Now I'm saying "screw it" and not bothering to cover it up, but it feels awkward.  I'm not really sure yet how I'll answer questions about it.

TENS feels like an almost pleasant buzzy sensation.  There are various settings, and my sweet spot is between an amplitude of 2 or 3 (out of 8).  If I accidentally hit 3, I feel like my pelvis is being electrocuted and I think I've seen the muscles actually jump.  Not keen on repeating this for fun.  If it's at 2, I seem to get no therapeutic benefit.  Has to be riiiiight at 3.78 or whatever and my OCDness makes me constantly adjust it.  Doesn't help that the muscles get used to a setting and then require a higher one.

In addition to looking like I'm a 90's era drug dealer who's checking pages constantly, I sometimes flash people my electrodes.  I'm pretty sure the cashier at the grocery store today saw a sticky pad in the process of falling off.  The damn things will not stay on unless I tape them with medical tape.  The adhesive on the medical tape makes me welt up and itch; as of 5 years ago, I'm allergic to anything resembling a Band-Aid.

Moving on to meds.  I sooo wish I could stop taking all of them, just taper off and not look back.  Go to acupuncture and massage and hot stone treatments once a day (each) and meditate the rest of the day.  Unfortunately, that's not my life.  I have a desk job and sitting compresses some key nerves, make my nerve issues worse.  I'm finding ways to work around it, but avoiding sitting entirely hasn't cured me, either.  If I could find SOMETHING, some magic fix that did not involve 4 hours of PT/day, I would do it.

In the meantime, I take meds.  I've decided I'm really tired of Lyrica.  We increased my dose recently because I think it does help the pain, but I'm so sleepy now.  All. the. time.  With my doctor's blessing, I tried going back down to my previous dose over the weekend, but my pain flared and I decided I'd have to cope with sleepiness on the higher dose.

I've been having horrible headaches lately.  I've never been a headachey kind of person; never had a migraine (knock on wood—I know I'm very lucky), really only have headaches when I'm coming off caffeine.  My theory about the recent headaches is that the neuropathic pain has made its way to my brain and is eating it from the inside out.  Or possibly something less dramatic.  I've been having less neuropathic pelvic pain, but the neuropathic stuff has been making its way up my torso for some time now, giving me an aching burning sensation in the middle of my body.  And after the core pain started, my headaches started.  So the pelvic disease is spreading.

It is indeed really weird how pelvic pain can leech out and invade YOUR ENTIRE BODY.  I'm capping because it is really freaking dramatic how horrible it can make your life.  And when I treat the pelvic pain by putting TENS electrodes on my abdomen, I can often make my headache go away.  So freaky. 

I've written a lot of posts in my head lately that haven't made it here, and one is about body image.  Of course, mine took a big hit with having the low-functioning ovaries of someone 5 years older than I, a ute with multiple issues, and endo that invaded my abdomen.  Now I also have to hate my pelvic floor muscles, which were body parts I'd never thought about before this.  Yay.

As I read back over this post, written earlier in the afternoon, I'm amazed I was able to have any kind of sense of humor in it.  It's been a rough day.  I'm gonna have my husband drive me to work for a couple of days because driving is hard.  It's hard to concentrate when you're in pain, when Lyrica is making you tired, and sitting up is an issue.  At least I tilt my seat back if my husband drives me.

I think what's scaring me so much right now is the prospect of another flare.  It's reminiscent of my fear in the years following my first episode of severe depression.  Every sad mood, every PMS moment, every break-up, was cause for alarm that another severe depressive episode was starting.  These days, a few bad pain days in a row freaks me out.  I can't do the flare thing anymore.  What if it starts, how will I cope with more missed work, how long will it last, how much will it put everything else in my life on hold, like adoption...

I've started meditating daily again.  I'm proud that I found room for it in my schedule; it's nice to be back to it.  Also, the guilt from not doing it was intense.  I'm putting a lot of pressure on myself to meditate the pain away, or do enough of some alternative treatment that will make everything ok.  I feel addicted to TENS (which in itself isn't a huge problem, as long as you take breaks periodically), I feel slightly panicked that I don't see my PT again until Friday...everything is worse now, too, because I haven't been sleeping well.  Working with my psychiatrist to get that worked out.

Another thing to feel guilty about:  we still haven't finished the DVD from the adoption agency we're interested in.  I just haven't had the energy, or I've had too much energy; when I've felt good since my last flare, I just wanted to be doing fun or immediately productive things.  Adoption is daunting.  I think my goal for this week, knowing that we're meeting with our adoption resource couple this Sat, is to let myself off the hook for watching this DVD.  I just need to make it through the week and it will be fine if we don't watch the DVD.

In less depressing news, Homeland is amazing and highly addictive.  Will temporarily take the place of Breaking Bad until the new BB season comes out on DVD.  Saw The Hunger Games for the third time on Friday, which was maybe two viewings more than I needed to see this year.  Love it but not three times/year love it.  Our DVR hates us and has not been recording Project Runway recently.  Dislike.

Ok, signing off!