Monday, September 26, 2016

Follow-up

Last Tuesday I had an appointment with my gynecologist to go over my test results and determine next steps.

I was equally unimpressed with the receptionist (same one as the first appointment), but I had a new nurse who was much nicer.  I wasn't as impressed with the doctor this time, but my opinion was probably colored by having to wait 90 minutes past my scheduled appointment to see the doctor.  Though I will say that the 90 minute wait probably made me a little less willing to be nice/friendly/agreeable, which helped me to advocate for myself during the appointment.

As it turns out, all of my test results were indeed normal (as indicated on the form letter with checked boxes), including the "best" FSH I've ever had, though as a friend reminded me, your worst set of test results tend to be the most accurate predictor of fertility.  I ended up getting the results in advance of my appointment (thanks for the tip to get them directly from the lab, Obie!), so it sort of helped me frame how to think about the appointment. 

There was nothing to even remotely explain the hot flashes.  She even threw out the idea that maybe they were psychosomatic and suggested that I take Prozac (an SSRI), which would also help with the wicked PMS/PMDD.  I don't have any issues with psychiatric medications and I think they are a wonderful tool for people who need them, and I know that there have been studies done to show the effectiveness of SSRIs in treating hot flashes, I just felt like she was implying that they are all in my head.  I swear to god that they aren't in my head. 

There was no more conversation about my longer than average periods.  Honestly this is my lowest level concern because I've had 8-10 day periods for most of my life, and now is no different.  The part that is surprising to everybody but me is that I have 8-10 day periods in spite of the IUD.  And the fact that they are so much lighter compared to pre-IUD periods, I can definitely live with them!

So next came the conversation about the pain.  The pain is hard to describe.  Sometimes it's like stabby pain right in the middle of my uterus.  Sometimes it's more like period cramps (when not on my period).  Sometimes it feels like my uterus is trying to expel itself from my body.  Sometimes it's more like a million pin pricks all over my abdomen.  Sometimes it's like a lightening bolt struck me in the cervix.  These pains occur randomly throughout my cycle, but always during my period or in the days leading up to it.  Those are the pain symptoms that come and go.  The pain symptom that is constant is in the vicinity of my right ovary.  It's not a cyst or anything else that can be seen on ultrasound or felt during an exam, but the pain is constant and has been for almost three years.  The intensity of the pain varies, but it's always there.  There is always some sort of pain somewhere.  I have long suspected endometriosis is the culprit.  No doctor has ever really listened when I described this pain.  I don't know that this doctor believed me either, but at least she's willing to investigate. 

I have a diagnostic laparoscopy scheduled for November.  If any endometriosis is found, it will be removed to the greatest extent possible.  I don't really have time to recover from something that is technically considered surgery, but my need for answers outweighs any inconvenience at this point.  Once the blood tests and ultrasound came back normal, I think she was keen to let me walk away without further investigation just like so many doctors throughout the course of my life.  I had to push harder for the laparoscopy then I should have needed to, but in the end I got what I wanted, and in November I will hopefully have answers.  I've literally had it with the pain and I've had it with not being taken seriously.  For the first time in my life I'm actually thankful that I had a long wait in the waiting room because I think this put me in a little bit of a bad mood and gave me the courage to stand up for myself.

Oddly enough, I stumbled across this article on doctors not taking women's pain seriously and shared it on my Facebook news feed.  Of the people that commented on the article, three people experienced at least one ectopic pregnancy, one had a miscarriage, one had a large non-cancerous ovarian tumor, and one had a brain tumor removed after 18 months of having debilitating migraines and no one bothering to do a scan (and once they found the tumor, she was having brain surgery in less than 48 hours).  So I guess whether it's acute pain or chronic pain, women's pain isn't taken seriously.

Wednesday, September 21, 2016

Avalanche: A Love Story

A few weeks ago, Pamela posed the idea of doing a book blog tour for a newly published book, Avalanche: A Love Story by Julia Leigh.  For a link to the other reviews, click here.

I decided that I wasn't going to do a review, not because I didn't want to read the book, but because I knew I had a heck of a month coming up at work and didn't know if I would have the time to devote to reading the book and writing a review.  Then Rachel Cusk's review of the book came out in the New York Times and I decided that I wasn't going to stand idly by while some hoity-toity, non-reproductively challenged bitch woman raked Julia Leigh over the coals with completely uncalled for personal attacks, both on her, and on those who utilized science in their attempts to have children.

First of all, I admire anyone brave enough to put their story out there for the general public, knowing that they're probably going to be ripped to shreds because the topic is an uncomfortable one and wrought with judgement and lack of understanding and empathy.   Many thanks to Julia for adding a much needed book to an important category.

I downloaded the book on iBooks for, I think, $12.99 US.  I probably would have preferred a paper copy of the book, but I also seem to be lacking in advance planning skills as of late and didn't get it ordered in time, so the virtually instantaneous access that an e-book offered was right up my alley.  Plus I apparently had iTunes credit, so that was nice too.  Anyway, the e-book format wasn't as refined as others that I've read, but I don't have any complaints about it, particularly since I was reading within two minutes of buying it.

Based on the cover alone, which depicts a woman holding a newborn, I might not have even picked it up for fear that it was just another "happy ending includes a baby" infertility book.  In this case, I had the advantage of recommendations from Pamela and Mali, so I knew that the happy ending of the book didn't include a baby. 

The book itself was short.  I'm not sure how many pages the paper book has, but my e-book had 79 pages with my font size settings.  I read it in about two hours in one sitting while sipping on a big glass of wine.  I read it again a few days later and it took a bit longer because I was making careful notes of things I wanted to touch on in this review.  The fact that it is such a short read is definitely an asset, I think.

I appreciated the author's ability to say so much with so few words.  Essentially the book chronicled Julia falling in love with the man she would later marry and try to have a child with, that marriage falling apart, trying to conceive with sperm from a known donor, and then falling in love with her life and accepting that she'd never have children. The chronology of the story line was easy to follow.

There were so many times where I found myself nodding my head in agreement or understanding.  For example, early in the book she describes her "deeply ambivalent view of motherhood."  I get this.  Like Julia, I wasn't sure if I wanted kids at all, until I wanted them, and then I wanted them really bad, including the "irrational leap" she made when she concluded that her chances would be better than other women her age.  It took me right back to the crazy part of trying to have a baby, because I did the exact same thing!  I also appreciated her honesty about the toll that trying to have a baby took on their sex life.  I think that anybody who tried to have a baby for any length of time can relate to this.

At one point she talked about "our child," a concept that I fully related to.  While hubs and I never ventured down the IVF path, our hypothetical child was very real to us too (including the discussing names), but I've never quite been able to figure out how to talk about it.  Julia did this for me.  Since I can't say it any better than she did, the quote from the book is:
“I’m an expert at make-believe. Our child was not unreal to me. It was not a real child but also it was not unreal. Maybe a better way to say it is that the unknown unconceived had been an inner presence. A desired and nurtured inner presence. Not real but a singular presence in which I had radical faith. A presence that could not be substituted or replaced.”
I could also relate to Julia and Paul's (the partner/husband/ex-husband) first trip to the fertility clinic, right down to dressing smartly.  She described the fertility clinic as a "temple of discretion" and honestly she could have been describing our fertility clinic too.

Regarding Paul, I must admit that there were a few points where the big sister in me wanted to grab Julia by the shoulders, look her dead in the eye, and tell her to run the hell away from that man and never look back because he wasn't good for her.  But love is a weird thing, especially when the good parts are so good.

I loved her detailed descriptions of egg collection, IUI, IVF, donor sperm, and a variety of other important facets of the reproductive process.  I felt these descriptions would be really important for someone just dipping their toe into the world of infertility or assisted reproduction or if the reader was someone who was supporting a person going through treatment.  I also really appreciated how she gave the actual cost for each and every procedure.  I think that so often these costs are hidden or spoken of in generalities, so I appreciated how upfront she was about it.  I liked how she was quick to point out that because of past financial windfall she was able to pay for treatment without incurring significant debt or hardship, and acknowledged that not everyone was in the same financial position as she was.

One of the most poignant parts of the book for me was when she touched on the societal perceptions of IVF patients.  She said:
“In the public imagination – as I perceive it - there’s a qualified sympathy for IVF patients, not unlike that for smokers who get lung cancer. Unspoken: “You signed up for it, so what did you expect …?”
I don't know how many times people have said thing that completely minimize the life-altering experience that infertility is, and the quote above captures that explicitly.  There's always the assumption that we did something wrong or that we did something to deserve it. 

My biggest takeaway from the book came on the last page, where Julia described her relationship with her nieces.  This is something I've been making a more conscious effort to do.  One of my nieces was born during the hardest parts of infertility and then two nieces and a nephew were born in the aftermath of accepting that we'd never have children in back to back to back pregnancies.  For a long time I had to keep them at arm's length because it was too painful.  For the longest time I looked at them and saw what we missed out on, but I'm starting to turn that attitude around and I'm starting to really enjoy spending time with them (and spoiling them).

In conclusion, ignore the NYT review (unless, of course, you want to write to the editor and tell them all of the reasons that the paper should be embarrassed that they published such a terrible review, in which case, go for it), acquire a copy of the book, and read it.  I think that this book is important and adds to the conversation about the toll that infertility takes on a person and a couple as well as building a life after treatments don't work out.

Thursday, September 15, 2016

Odds & Ends

  • I finished reading Avalanche by Julia Leigh and I'll post about it on September 21st, as part of the book blog tour that Pamela is hosting.  The author has signed on to answer any questions that we may have about the book.  As you'll see on Pamela's post, quite a few bloggers have signed on to do it.
  • My entire family (parents, siblings, their spouses offspring) is having family photos done on October 8th.  I'm approaching these pictures with the same excitement that one typically reserves for dental work or trips to the DMV.  In some respects these pictures have been two years in the making, but people kept getting pregnant so they were delayed so everybody could be in them.  While I sort of feel like these pictures will be an exercise in "pick which couple is different," I am actually looking forward to having some nice pictures of hubs and me.  I'm also taking our dog to be in the pictures because I figure that if I have to drive 150 miles for stupid pictures that I don't particularly want to be in, that I'm taking my dog to be in them too.  And he's wearing a bow tie.
  • I got a form letter from my gynecologist's office telling me that all of my blood work came back "normal."  I understand that this is common practice and that most people don't care about the actual numbers, but, as someone with an honorary degree in reproductive endocrinology courtesy of infertility, I want the actual numbers.  I also wonder how much care was taken in interpreting the results (likely by some member of the office staff as opposed to the actual doctor) since they reported that my thyroid test was normal.  Which is good news until you consider that I didn't have my thyroid tested.  
  • I had my pelvic ultrasound on Monday.  My IUD is in the correct place, so that's really good news.  Also there were no cysts visualized except for follicular cysts, so that's good too.  The ultrasound didn't reveal any cause of my near constant right ovary area pain (at least per my educated guess-the tech, of course, couldn't provide too much by way of explanation).  The surprising part is that I actually had two pretty good sized follicular cysts.  I didn't go far down the treatment path, but I can tell you that I never had two at the same time, and I never had one as big as the 25mm that I had on Monday.  So I think that my body is trying to pull a rabbit out of a hat or something, and I'm not sure how I feel about it.
  • I go back to the doctor on Tuesday.  I'm not nervous like I was for the initial visit, but I am wondering what the next course of action is going to be.
  • I am so unbelievably sick of politics.  I'm not one to wish away time, but I literally can't wait until the second Wednesday of November, because that will mean that all of the campaigning is over (at least for 18 months or so, in theory).  I am uneasy about how this is all going to end.  
  • Today I feel very fortunate to have the flexibility to work at home sometimes.  I'm currently working from the comfort of my deck and enjoying this beautiful weather.  I also love that I can take a break and write on my somewhat neglected blog. 

Sunday, September 11, 2016

Reflecting

Today is the 15th anniversary of the terrorist attacks of September 11th 2001.  I think there are days in all of our lives that are so deeply etched in our memories that we can't possibly forget.  9/11 is one of those days for me.

I was 20.  A junior in college.  I got back to my apartment after class, flipped on the tv out of habit, and went to the kitchen and got a bowl of cereal.  Cheerios.  I walked back into the living just in time to see the second tower fall.  Then the Pentagon.  Then Shanksville, PA.  I got my roommate out of bed.  We sat on the couch and cried.  A few months later that same friend saved up some money and we hopped on a bus and headed to New York City.  We needed to see it for ourselves. 

Classes were cancelled for the rest of the day.  There was confusion.  A friend was in panic mode because her dad worked at the Pentagon (thankfully, he was fine).  I remember the line (and the price gouging) at the gas station.  I was an adult.  But I was a kid.  And I wanted to hear my mom's voice and know for sure that my family was ok.  I wouldn't get through on a cell or land line until the next day.  In the days that followed friends who were in the National Guard or the Reserves were called up and deployed.  It was surreal.

I grew up a lot that day and in the days that followed.  In many ways, that day shaped who I am as an adult. 

Fifteen years later so much time has passed, but yet it seems to stand still.  On Friday I stood in front of my students, college Juniors.  The same age that I was when it happened.  It quickly became apparent that, while they were alive when 9/11 happened, they didn't live it.  It took me a bit to wrap my brain around this.

In the days that followed 9/11 the United States was more united than it had ever been (in my lifetime at least).  Political party didn't matter.  Or religion.  Or gender.  Or income.  Or where you lived.  Or your education level.  Or anything else.  We were Americans.  Terrorists attacked us on our soil.  And we were going to go and kick their asses, even if it wasn't yet clear who "they" were. 

I miss that unity. 

Saturday, September 3, 2016

Update

This is an update to my last post.

I went to the gynecologist on Thursday.  I had low expectations.  I mean really low.  I took a page out of Sarah's book and wore a sexy bra and underwear set, wore full makeup and my favorite lipstick, and wore as cute of an outfit that I could get away with considering that I was headed to work afterwards (I can't find the exact post, but I'm 99% positive it was her).  I figured that if I was going to an appointment with the potential to be really shitty, that I may as well look good. 

When I walked into the office, my already low expectations were lowered.  I checked in with the receptionist who generally lacked in personality and got my new patient packet and made my way to the waiting room.  In the waiting room there was a rack full of Jesus books.  I fought the urge to leave.  I worked my way through the mountain of new patient paperwork and got to the last page, a consent to charge my credit card whenever I had a balance with the practice.  I obviously declined and added a statement to the effect that they do not have permission to charge my card in any circumstances.  I paid in cash for good measure.  Two strikes against them.

They called me back fairly quickly, which was good, because I was really teetering on the edge of walking out.

I got back to the exam room, where I did some more intake stuff with a nurse, who also lacked in general personality.  She asked how many pregnancies I'd had.  I told her zero.  She didn't win any points with me when she reminded me that "I'm young" and that "there's a lot of time left."  I started to shut down at this point.  I think that my demeanor encouraged her to make quick work of the remainder of her intake questions with minimal commentary.  Three strikes.

You're probably starting to feel sorry for me right about now.  Don't.  It got much better.

The doctor walked in.  There was something about her that started to put me at ease.  She asked about me.  Like she was interested in me as a person.  I started to feel comfortable.  She got more of my history and asked a bunch of questions.  Not the questions that made me feel like she was reading off of a list, but questions that actually followed up on the answers that I gave her.

We got to the part about infertility.  I told her everything, about all of the test results, about not pursuing treatment.  She reached over, touched my hand, and said "I'm really sorry that you had to go through that.  It must have been hard."  I was honestly taken aback.  I'm not used to this sort of empathy and compassion from normal people, let alone a medical professional.

She didn't discount any of the perimenopause symptoms and assured me that there are options for treatment.  She agreed that my symptoms were likely due to low estrogen.  She'll likely start me on a birth control with estrogen in it to see if that helps as opposed to jumping straight to HRT.  She did briefly mention taking a low dose of Prozac to help with the mood swings and, oddly enough, the hot flashes.  I absolutely hate the idea of taking an anti-depressant, but we'll see.

She ordered a bunch of blood tests (all hormone related) and a pelvic ultrasound to check things out.  I go back on September 20th.  On that day I think she'll do an endometrial biopsy and prescribe the birth control.  She's willing to do the laparoscopy to formally diagnose endometriosis and clean it up, so I'm sure we'll talk more about that at my next appointment too.

So long story short, I can deal with the Jesus books, the receptionist without personality,  and the nurse that was a jerk, because I really, really liked the doctor.  I still can't believe that I was so lucky to find her.  I was prepared to go in there and fight for myself, but I didn't need to at all.  I'm exhausted from it all, still.  But mainly I'm thankful that I was finally heard.

Tuesday, August 30, 2016

Outlier

I am an outlier.  The average age for onset of perimenopausal symptoms is 45 (citation).  I'm a full decade ahead of schedule.

I could make a joke that this is the first time I've ever been early for anything in my life.  I've been known to handle difficult things with sarcasm and mildly inappropriate humor, but right now I don't feel like joking. 

For the most part I've accepted that my cycles are probably going to lack predictability for whatever remaining time that I have one.  I've learned what my triggers for hot flashes are and strategies that are mostly effective for dealing with them.  I understand that I'm probably not going to be able to wear heavy sweaters anytime in the near future and that I probably won't need to wear a winter coat again this coming winter.  With as much as I hate it and miss it, I know that cuddling with my husband isn't going to be as frequent, because the added body heat always triggers a hot flash, and cuddling with a hot, sweaty mess isn't any fun for anybody.

I'm convinced that the progesterone in the IUD has helped with some of the symptoms.  While I'm not one of the lucky majority who stops having a period after they get an IUD, my periods are much more manageable and I haven't had a scary one in the almost 18 months that I've had it.  I think that it's also helped with itchiness and skin dryness.  For these reasons, it's worth keeping, even though there's not a whole lot else that I like about it.

I've always had PMS related mood swings, and these have intensified with perimenopause.  For the most part I can keep these in check.  But sometimes not so much. 

I'm struggling with the fact that many in my peer group are still popping out babies, seemingly with ease, and I'm over here just hoping that I start my period soon.  It feels like some kind of cruel joke.

I'm also having a hard time with what this all means for bedroom activities.  The truth is that I don't really feel like having sex most of the time, and even when I do, my body is uncooperative.  It makes me feel incredibly broken and unlovable.  (I feel like I should mention here that hubs has been a saint and even though he's just as frustrated as I am, he's also been incredibly understanding.)

Based on the reading I've been doing, it seems that none of this is atypical for perimenopause.

I can't help but feel like I am too young for this though.  And I can't help but feeling like no one (meaning medical professionals) takes me seriously when I talk about this stuff.

Right now I'm in the midst of a particularly brutal (and long) cycle.  My mood swings are out of control.  I don't want to be around me right now, and others shouldn't have to endure me either.  Really, until I start my period, the most suitable place for me is probably an isolated cabin in the woods where I am not required to interact with my fellow humans.  I literally feel like I'm teetering on the edge of going crazy.  I don't even know how I'm managing to function in daily life.  I don't like feeling like this.  Everything is magnified and I don't really like myself right now.

And this isn't even mentioning all of the other stuff that I feel is likely related to endometriosis.  Of course, this is a self-diagnosis, because even after 20+ years of trying to get doctors to listen to me, including a full infertility workup, I've been fobbed of and it's never been investigated beyond a pelvic ultrasound, which we all know is not the proper diagnostic tool for this condition.  Eventually I gave up trying to talk to doctors about it.

I'm going to the gynecologist on Thursday for my (overdue) annual checkup.  This doctor and practice are new to me.  It's a gynecology only practice, so hopefully some of the triggers from the old practice (e.g., waiting rooms full of pregnant people) won't be present.  I'm anxious.  I'm wishing that the appointment fell during a more normal cycle where I felt more like myself (a logical, rational human being, for the most part) and not like the Wicked Witch of the West (who may commit homicide or start crying for no apparent reason).  I hope that I like the doctor.  I hope that she's compassionate and empathetic (or at least pretends well).  And most of all I hope she listens and takes me seriously.  While I'll consider the appointment a success if I manage to not loose my shit while I'm there, I'm really hoping to hold it together for long enough to talk about getting a laparoscopy to formally diagnose and remove endometriosis and weigh the pros and cons of hormone replacement therapy. 

I needed to get this off of my chest.  I'm having a hard time dealing with it right now. 

Wednesday, August 24, 2016

On my second blogaversary

Two years.  Two.  That's how long I've been blogging.

41,137 page views
177 posts
1406 comments

The stats don't provide the full picture though.

Friendships
Empathy
Compassion
Growth
Knowing
Acceptance

Those things and their impact can't be measured.

I do not have adequate words to express my gratitude for everyone who has been here for all or even part of this journey.  I owe a lot of the credit for where I am today to you.  The readers of this blog have been simply amazing.  I wouldn't be where I am if not for you. 

I am not the person that I was two years ago when I clicked "publish" and took my first blog post live.  I'm stronger.  I'm more confident.  I am resilient.  I've learned the importance of embracing grief, sitting with it, and working through it.  I've learned that my feelings are just as valid as anyone else's and that I don't have to apologize for how I feel.  In the last couple of weeks I've had more than one person tell me "you seem different" or "you seem more alive."  And the answer to both of those statements is that I am.  I'm emerging from the black cloud of infertility.  Dare I say it, I'm even happy most of the time.

There have been a lot of hard things in my second year of blogging.  I skipped my sister's baby shower and caused a bit of family drama.  My sister gave birth to my nephew and promptly forgot the struggle of infertility.  Two of my nieces celebrated their first birthdays.  I saw the conclusion of 22 consecutive months of at least one sister being pregnant.  Plus all of the unexpected stuff that jumps out and smacks me in the face when I least expect it. 

But there have also been a ton of great things about the past year.  Hubs and I bought a house and spent time fixing it up (only one urgent care visit required-so far) before we moved at the end of May.  Buying a house, I think, was a huge step in healing.  It is a happy house.  A house of hope and healing.  I got to meet fellow bloggers Justine and Sarah and for the first time in a really long time I could just be.  Conversation hasn't come that easy in everyday life!  I celebrated my 35th birthday and finally understood the cause of my midlife crisis.  I also took a huge step and outed hubs and I on Facebook for National Infertility Awareness Week, and the response was better than I ever could have imagined and I regained a lot of faith in my fellow humans. 

I'm looking forward to year three of blogging and reading blogs.  I hope I have enough to write about!  In the coming weeks you get to hear about my (overdue) annual visit to the gynecologist, always a treat for us infertility survivors.  My sister is also planning family pictures  for October, so I'm sure this will provide plenty of good topics for writing too, since, to put it nicely, I am not looking forward to this.

I've been buried with work lately.  I look forward to catching up on all of your blogs soon!  But in the meantime, thanks for reading, and thanks for being there for me.