First It's a Room, Now It's a Clock

As if the vagina room analogy wasn't enough embarrassment, my PT informed me today that my vagina is also a clock.  Wonderful.

Both analogies are my abbreviated way of saying that we've figured out that some of my pain issues are associated with pelvic floor muscles.  Not a shocker, but at least we're making progress.  My PT isn't sure why I'm also having upper abdominal pain, so we're treating that as a separate issue.

The pain doc switched me from Neurontin (gabapentin) to Lyrica, and I can't tell if it's helping at all.  What it is doing is making me incredibly sleepy.  My max coffee dose per day is usually one cup and then the jitters set in, and now I'm up to four cups and still feel like I could take a nap.

Dr. Third Opinion helped us zero in on specific pelvic floor muscles, and he reiterated the pain doc's pronouncement that PT is where it's at.  He gave me yet another medication, a muscle relaxant, which I think is helping.  Maybe.

Pain doc has referred me to another clinic (YAY!  More appointments!  More copays!  More internal exams!), where I'll get a fourth opinion.  The main reason she wants me to go there is to get a more integrated treatment plan.  She thinks the doctors and PTs work more closely there, and the clinic itself specializes in pelvic pain.  The clinic is part of a different health system, so getting my extensive medical records transferred over will be interesting.

Some of you have asked if I've tried certain treatment modalities, and it seems like a good time to list the ones I've tried.  Here goes.  The ones I'm currently using are underlined.

• Medications
• Lyrica
• Neurontin (helped but not enough)
• tramadol
• muscle relaxants
• NSAIDs (didn't seem to help)
• narcotics (only help in the short term; not a good long-term strategy)
• the Pill (epic fail; cried constantly when I was having a pain flare)
• Supplements
• pycnogenol (recommended by an acupuncturist to help relieve uterine cramping; super expensive but is maybe helping)
• Alternative therapies
• abdominal massage (helps a good deal; go once a month)
• acupuncture (effective during the session but not afterward; stopped going)
• meditation, including mindfulness, guided imagery, and affirmations (hasn't been effective for pain relief; I'm a fan in general, but am not able to stay awake during it because of the meds I'm taking)
• Movement (or lack thereof)
• PT, including stretching, strength training, ice, and heat (seems to be helping)
• not moving, aka lying down
• walking (generally makes the pain much worse; struggling to find the right balance)
• Other
• living my life, including working, etc
• distraction, including but not limited to reading, watching TV, talking to friends, etc

A common theme here is expensive.  Holy cow, the bucks I've been shelling out.  Treatments that don't seem to help are given a fair shot and then ditched.

My parents just left our house.  They'd stayed for a week, and today is my first day back at work.  We mostly hung out on our back deck and watched baby birdies.  The baby cardinals and baby bluebirds have left their nests, but two mommy house finches are sitting on nests on our front porch.  Busy birdies!  I'll get some more photos up soon.

Looking forward to ICLW!  Am not looking forward to waking up at 3:30 tomorrow morning for my work trip.

Awkward Analogies with Dr. Third Opinion

I'll give you the deets later for my appointment with Dr. Third Opinion, but for now, here's a list of Things I Wish My Doctors Hadn't Said.  I'll start with Dr. Third Opinion's classic:

1.   Imagine that this room is your vagina.  Could you come up with an analogy that doesn't have us standing in my vagina?  It caught me so off guard that I couldn't remember which wall was my cervix.

2.   This exam will make you feel like you're peeing on the table.   Said to me before an abdominal CT scan.  At least they warned me.

3.  Is there any chance you could be pregnant?  This one is especially good when asked right before a D&C.  Um, yes, but with a dead baby?

4.  We don't know what's wrong with you.  Variations include "None of our patients have this much pain after surgery" and "I'd be happy to refer you to one of my colleagues."  Sometimes, this is followed by #5.

5.   One option is for you to go to the ER tonight. This one made me transition from mildly concerned to freaking the f*** out.

6.  We need to do surgery to see how messed up you are inside.  Listen, buddy.  Infertility has screwed with my body image enough without you adding "messed up" to my negative self-talk.  The doctor who said this a while back wanted to get my laparoscopy business.  He didn't get it.

****

A short update:  Pain sucks, but family visits mean that my food supply is solid.  I have a work trip on Thursday and I have to get up at 3 a.m. for my flight.  It is going to be a very rough day.  Will my coworker need to push me in a wheelchair through the airport?  Stay tuned.

A Blogger's Kindness and Bird Photos Part I

Last week was awful.  Missed work, urgent care, and weeping kind of awful.

However, my foul mood was intercepted by a blogger's thoughtful gift in the mail.  Justine at A Half Baked Life sent me a lovely and delicious care package of these cookies. 


Perfection in a cookie

I take cookie quality very seriously and do not make this assertion lightly:  these are some of the best cookies I've ever had.  They are possibly second only to my sister's chocolate chip cookies, and I would be disowned from my family if I claimed any cookies were better than those.  Justine's cookies have fruit, almonds, and the clincher, coconut.  Moist, soft, flavorful, substantial...they have it all.  You must try them.

After eating an embarrassing number of these this week (only three were frozen for later), I'm feeling a tad better.  A smidgen less pain and, perhaps more importantly, reminded of all the love and support I have.  Thank you, Justine!

As my husband and I enjoyed the last of the cookies this morning on our deck, we watched a bluebird mommy and daddy bring bugs to their babies in the birdhouse.

HYDRANGEA (and blue birdhouse)

Um, so perhaps I'm a little obsessed with my hydrangeas right now and didn't focus on the birdhouse.  But you can see it in the background.  We haven't seen the baby bluebirds yet, but from the sounds of their chirping, we have at least three.  I mean, the mommy and daddy bluebird have at least three.

Bluebirds have been nesting in that house for years, which perhaps explains our lack of excitement about them.  We've seen lots of their babies come and go and have become rather "been there, done that."  Yeah, miracle of life, bird reproduction, blah blah blah.  But nothing could have prepared us for the tiny baby cardinals my husband discovered this morning.


Four babies tucked away in the butterfly bush





Our little beauties

Amazing, right?  So ugly cute.

My mom and dad are headed up here for a visit, and I told them we have birds aplenty to show them to compensate for our lack of baby humans.  I estimate that we've had at least 20 baby birds hatch within a few feet of our house this spring.  Overcompensate much?  Lots of birdie Fertile Myrtles in these parts.  Coming in a Part II post is a Carolina wren mommy defending her nest.

To the Coworker Who Saw Me Crying Yesterday

I truly appreciate your concern, but yesterday's pain episode isn't out of left field for me.  I haven't kept you completely up to date on the status of my pain because I'm bored with it.  I want to talk about other stuff, do other things, and actually work.  But I've never been close to being rid of the pain since my surgery 3 months ago.  It just ebbs and flows.

Another reason I haven't wanted to talk about it is because I don't want to open the floodgates.  That's why I may seem detached and unemotional when I talk about how I'm doing.  If I really tell you, if I really let my guard down, I may start crying and not be able to stop.  I've cried enough on my own and am not a huge fan of doing it in front of other people, especially at work.

Yes, my pain was severe yesterday and still is.  But I don't think it's ER-worthy.  In the past 3 months, I have had dozens of doctor's appointments to confirm that I'm not dying or criminally insane, and I don't think they would tell me anything different today. 

I have a call into my pain doctor but the asshole clinic isn't calling me back.  On the triage nurse's message, she says that they'll get back to you ASAP.  If you leave multiple messages, it will delay their response.  If you call after 3:00 pm, they won't respond until the next day.  I called at 3:02 yesterday.  They say prescription refills can take up to 48 hours.  What do you bet they aren't including weekends as part of their estimate? 

So I suppose I'm expected to either suck it up and deal with pain at 7 or 8, or go to the ER and wait hours to be seen by someone who can't offer me a better diagnosis.  I'd rather suck it up.  Call me crazy, but I don't really want to rack up more medical expenses for no reason, especially after the $1200 (after insurance) appointment at a psych clinic that determined I'm not a drug seeker.

I will be getting another opinion soon, this time by a surgeon at the clinic where I had my endometriosis surgery.  No, there is no way I'm having laparoscopic surgery again, not after the past 3 months., but maybe this doctor will have a new idea for what's going on.  Probably not, though.  The physicians I've seen already are probably among the best in the state, if not the region, and I trust them.

I have an idea of what brought on this flare, but, no offense, I'd rather not share it with you, you being a coworker and all.  There are some things I'd just rather not disclose about my lady parts.   I do have a few boundaries.

As to the question of whether my pain is under control, well, it's complicated.  It's been under control for the most part lately with the multiple non-narcotic prescriptions I take for it, but when you saw me crying uncontrollably, it was not under control.  I have not yet figured out how to anticipate every new throw my condition will hurl at me.

So I'm sorry for not keeping you in the loop.  Your support is amazing and the love so many people are directing my way is what's keeping me going.

Thanks,
Cry Baby

Happy Anniversary to Me

My 3-year TTC anniversary is coming up in August, but I feel a bit like a fraud for saying that.  We haven't actually TTCed for the past year in any sense of the word.  No timed intercourse, no IUIs, no IVF.  I did deal with healing from a miscarriage, waiting on our lost baby's chromosome testing results, and undergoing two surgeries with sucktastic post-op recoveries.  And yet, even after a horrible year for my body, I find myself trying to write off the past year as if it doesn't count as time TTCing.  Part of it is not wanting to seem like I'm fronting around other IFers.

I've heard lots of sentiments similar to mine in the IF community; IFers who have taken breaks and imply that their months not spent TTCing don't count.  Friends with PCOS have said that since they didn't ovulate during the first year of trying, it didn't actually count as trying.  Or they only ovulated 3 times in a year so somehow, implying that they only get credit for being in pain part of that year. 

The pain-minimizing phenomenon really jumped out at me at the first meeting of my infertility support group.  We started off introducing ourselves and telling everyone where we were in the process.  I was about 1.5 years in at the time and hadn't started treatments, while everyone else had 3-4 years of TTC under their belts, often with IVF.  I felt like a fraud—who was I to claim I'd suffered when these women had been through so much?

Although I saw them as legitimate IFers, the group members were creative at finding ways to minimize their own struggles.  They'd say things like, "We've been trying for 4 years but we weren't really trying that entire time—we took time off between treatments."  When it was my turn, I found myself saying, "I've only been trying for one and half years and we haven't started treatments yet.  We're early in the process."  I'd had a miscarriage and a laparoscopy, but I needed them to know that I realized I wasn't in their league, pain-wise.

Although pain minimizing drives me a bit crazy—we've all been through a lot—all pain isn't equal.  Mali wrote a great post about this recently, emphasizing that this doesn't mean we shouldn't grieve, just that we need to keep some perspective about it.  So true.

I talked about perspective recently with my therapist, who says there are two ways to look at a personal struggle.  To paraphrase and probably oversimplify it, you can concentrate on how much worse you have it than everyone else, or you can focus on how others have it worse than you.  Clinical outcomes, however they were measured, tend to be better for those who concentrate on how others have it worse.

Lately, even with my ongoing pain, I've mostly been thinking lately about how others have it worse.  I'm in a gratefulness phase, which has definitely not always been the case since we started trying.  I feel like I have a pretty good perspective about all of this, but I'm not going to minimize what I've been through.  I'm 3 full years into TTC and it still sucks. 

*****
On the topic of gratefulness, you all constantly surprise me with the thought and love you put into writing comments.  You may not be huggers and I'm not even super huggy myself, but your comments feel like big hugs coming through the screen.  I tear up while I read them and reread them when I need support.  Thank you. 

I welcome feedback if I'm saying something ridiculous, too.  If I need to have my thoughts rearranged, let me know.  In a nice way. :)

*****
I'm going on the Pill in the hope that calming down some of my monthly hormonal fluctuations will decrease my pain.  An additional benefit is that it's birth control; with the pain meds I'm taking, I can't safely get pregnant.  A huge drawback is that the Pill tends to turn me into Crazy Town, weepy and prone to temper outbursts.  People need to steer clear of me for the next few months.

When I talked to my RE about getting the Pill prescription, she seemed really surprised that I'm still in this much pain.  It scares me to be this much of an outlier; she's essentially telling me I'm the 0.01%.  I think I freak her out—I have been in constant pain for 3 months as a result of her performing surgery on me.  And she doesn't seem to know what to make of me.

My pain doc seems really sure of my diagnosis, though.  She hasn't shared the medical terminology for it, but it has to do with my history of pelvic pain, endo, and surgery sensitizing the nerves further.  I haven't asked her about my prognosis, but I need to.  Big time.

So I have the expert opinions of two doctors.  One is unsure of my diagnosis and worried about me, and the other says I just got screwed genetically and I'll eventually get better (at least, I hope she thinks I'll get better).  I'm starting to think a tad about getting a third opinion, although I'm not sure if it's necessary.  Pros are that it could give me peace of mind, help me get out of pain, and prevent this kind of shitstorm in the future.  Cons are that it's yet another appointment and copay, and I'm actually pretty confident in my pain doctor.  My pelvic pain was on the rise even before this latest surgery (thank you, blogging, for helping me remember that), and the uterine balloon was the straw that broke the camel's back.  I'll be thinking about a possible third opinion.

*****
In addition to "celebrating" our 3-year TTC anniversary, my husband and I had our 5-year wedding anniversary yesterday.  :)  Love you, baby!


Alright, I need to go read my book club book on our deck.  It's 80 degrees, sunny, and the mosquitoes haven't taken over yet.  Have a good one!

My Husband As a Patient

It's become abundantly clear since my husband broke his arm that he's not used to being a patient.  I've been to about a million doctor's appointments in the past few years; him, an annual physical.  Me, depleting our savings on repairing my uterus and receiving psychotherapy; him, occasionally spending a little on a new computer gadget.  So it makes sense that I've got the patient routine down pat while he's just starting to navigate the system for his own needs.

At urgent care right after he broke his arm, the doctor asked him, "And who are you?" as one of their patient identification questions.  He thought she was joking, so joked back with, "I'm the victim!"  Uh, no, honey.  State your name.

Yesterday, I went with him for a follow-up x-ray to make sure the broken bone hadn't displaced.  I was really nervous for him; after all, I'm used to receiving bad news in the doctor's office.  I'm often the statistically unlikely case and maybe my bad luck had worn off on him.  Two of my friend's daughters have recently had emergency surgery for broken arms.  Broken arms are serious shit.

My husband didn't seem too concerned about the x-ray.  When the doctor came back into the room to discuss the results, my husband barraged her with less pressing matters.  Can he do such-and-such, is this twinge normal, etc.  HONEY!  Let the woman tell us the x-ray results!  She might be about to tell us that our next stop today is the hospital!

He finally allowed her time to tell us that his arm looked great, thank goodness.  Surgery/casts avoided once more.

His naivete about medical stuff is endearing.  It's amazing that he's retained some innocence after all I've been through.  He's quite adept at helping me maneuver the medical system, but when it comes to him being the patient, he seems a bit lost.

****
Now I'm going to launch into another "woe is me" pain tirade, so feel free to leave off if you aren't in the mood/want me to get a life/have had enough of my griping.

I'm sick of this shit.  I'm also PMSing and crampy, both of which are not helping my attitude at the moment.  I'm starting to see trends with the pain.  Walking = more pain, which I've known for a while but sometimes have to relearn.  My menstrual cycle is also closely associated with the pain.  After this period, I'll probably feel pretty good for about a week before ovulation pain begins.  After ovulating, I might get a little relief before the late luteal phase cramps kick in.  All the normal cycling stuff further inflames whatever nerves, tendons, and muscles that already hate me from the surgeries.  I'm starting to admit that I need to think about this pain in the long term.  There will likely be no 5Ks this fall, more battles lost to cellulite, and a need to accept this pain into my life for now.

Writing this post reminded me to call my RE to see if maybe the Pill could calm down some of this.   I have less endo pain when I'm taking it so it seems like it could be an option.  It's not like we are going to be TTC anytime soon, anyway.  And I haven't talked my RE in a couple of weeks and she probably wants to hear my slightly annoying voice—ha.

I've had adoption on my mind.  A friend recently adopted a baby boy and it gave me hope, hope that sometimes adoption works out and hope that we have other options to explore.  And maybe I'm looking for a way out of this pain hellhole, but I keep thinking of reasons I want to stop giving my body to The Cause.  What if my next 3D sono causes a pain flare?  What if we see more scar tissue?  I'm sure as hell not going to have another uterine surgery to remove it.

What if we don't see scar tissue and we try another painful letrozole cycle, and I get pregnant only I'm in pain the entire time and the delivery leaves me with chronic pelvic pain for the rest of my life?  Or I get pregnant from letrozole, miscarry, and have another D&C that flares my pain for the rest of my life?  Or I don't get pregnant but the letrozole cycles themselves give me pain for the rest of my life?

Obviously, there's a lot of fear going on.  But there's also hope.  Hope that maybe someday soon I can give my body the break it desperately needs.  Not the kind of break where you take a few months off—I've taken off for almost a year, if taking time off includes endless procedures and surgeries.  I want the kind of break where we get off the damn TTC treadmill and find a way to start healing from the experience.

Role Reversal

My husband has been the caregiver since my surgery on 3/9.  While he cleaned the kitchen and took the dog out, I wondered if this would always be the dynamic in our relationship.  It's felt like it lately.  I'm the invalid, the weakling, the sickie, and he's the robust healthy one. 

I suddenly got my chance to be the caregiver on Saturday.  He missed a step in the garage and fell, breaking his arm.  I was proud that I stayed calm and focused in the face of emergency, finding an urgent care center online and ushering him into the car.  He kept insisting that it was probably just a sprain but I immediately knew it was broken.  Two of my friends' daughters have broken their arms in the past month so I was already thinking the worst, and it seems like arms tend to break, not sprain, when you fall on them.  And I could tell he was in a lot of pain.

The good news is that he doesn't need surgery or even a cast.  The orthopedist wants him to move his arm when he can—apparently this type of break doesn't require immobilization.  It's so nice to see his arm out in the open again, not wrapped up in layers of plaster and ace bandage.

He's needed a lot of help—putting on clothes, adjusting his sling, driving.  He's not supposed to drive for 2 weeks, so I'm in chauffeur mode, taking him to appointments and to and from work.  By taking care of him, I feel like I'm paying him back for all the times he's picked up my prescriptions, cooked dinner, cleaned up.  I know my score-keeping is ridiculous and that's not what marriage (or any relationships) are about, but it is nice not to be the patient for once.

*****
I'm in Panera now, which is a good thing because I'd be too embarrassed to start crying here.  It's been a rough couple of days.  Of course, my husband's broken arm has been a major stressor.  Then there was a pregnancy announcement yesterday that left me bawling in my office.  Still feeling fragile from the announcement, I saw my pain doctor this morning and got depressing news.  She's increasing my gabapentin dose, which is exactly the opposite of what I'd hoped would happened.

I know I'm not powerless in the patient/doctor relationship and could have insisted that it's time to taper off.  But it's really not.  Just when I think I'm doing better, my pain will come back and kick me in the butt.  I took a slow 2-mile walk last Friday with some coworkers at lunchtime, and by the evening I felt awful.  Saturday morning, I made an unwise decision to do some more walking, this time around an outdoor festival in my town.  Cue more pain.

So I know the right call now is to increase my meds, not taper off, but it's devastating to hear my doctor say it.  This means more time off of TTC, more time for my newly pregnant friend to progress in her pregnancy and leave me behind, more time for other friends to get pregnant and have babies #2 and #3, more time for my sister to sell her kids' old baby stuff because I can't bear to have any more of it in my house.  More time to grieve.  I want to move on.

My next appointment with the pain doc is in early July, and I fully expect to stay on the meds until then.  I need to suck it up and cancel my 3D sono appointment, telling my favorite scheduler that I'm not sure when I'll be able to reschedule it.

*****
I didn't realize physical therapy involved so much nudity.  At my last appointment, I stripped down to my underwear—even my bra had to be taken off.  I had on a skimpy hospital gown, which my physical therapist held open at regular intervals to check out my spine, hipbones, and pelvis.  At least she was thorough. 

Despite the flashbacks to RE appointments that my nude contortions inspired, I really liked my physical therapist.  My second appointment is today and I hope she can make some further inroads as to what's going on.  Based on our first appointment, my walking issues, and the current location of my pain, I think my major issues are with my nerves and muscles in my pelvic floor.  I'm doing my PT exercises religiously and eager to get more, even though PT is boring as hell.  At least I'm getting a little bit of exercise.

*****
If you haven't gone there already, please head over to see Belle at Scrambled Eggs.  She is going through a miscarriage and could use all of your support.  My heart goes out to her.