Dear Borders.

Backstory here. Inspiration to do something about it here. Readers: I encourage you to join me in my effort to bring some sensitivity back to the bookshelves.

-------------------------

Borders Customer Service
PO Box 7002
LaVergne, TN 37086

To Whom It May Concern:

Recently I was at your Boston store at 10-24 School Street. I was looking for a specific title on the subject of infertility, and was horrified to find where in the store the book was physically located (pictured above).

The infertility books were placed above a row of books that began the Pregnancy section, that expanded into the Pregnancy/Parenting section. This small shelf of books was also directly below a row of titles in the "What to Expect" series. This entire section was to the right of the Children's section. To get to a specific title within the Fertility/Infertility section, customers must pass the Pregnancy/Parenting section, due to the layout of this particular store. While I understand the importance of grouping like subject matter together, this particular shelving arrangement is unintentionally insensitive at best, and emotionally damaging at worst.

The emotional pain associated with an infertility diagnosis is comparable to the grief felt of losing a close loved one, such as a spouse, sibling, or parent. RESOLVE: the National Infertility Association has stated that "Studies have shown that infertility depression levels can rival those of cancer." For these people, even simple activities such as going to the store can be a painful, jarring experience, as there are reminders of failures and losses at every turn. Babies in strollers, the round bellies of pregnant women, and even unexpected pregnancy announcements at social gatherings can leave a person coping with infertility emotionally winded. I wish I could say that infertility is an isolated problem that would only affect a slim portion of your consumer base, but RESOLVE offers different numbers: "more than five million people of childbearing age in the United States experience infertility."

To put it simply: cookbooks or diet books wouldn't be placed next to or near books about coping with eating disorders. Books on mixology wouldn't be placed next to or near books about coping with alcoholism. Books about coping with the death of a child wouldn't be placed next to the Children's book section. And that's exactly what infertility is (especially diagnoses such as recurrent miscarriage): coping with the death of a child that might not be, with the death of a pre-imagined future of the way things were supposed to go.

It is my hope that these shelving arrangements are a store-by-store decision to be corrected by local managerial staff, and not a corporate-wide layout imposed by Borders. In either case, Fertility/Infertility books should be placed in the Health/Medicine section, ideally under Women's Health. Although infertility is not strictly a female issue, "approximately 40% of infertility is due to a female factor and 40% is due to a male factor (RESOLVE, 2009)." Ultimately, infertility is a medical issue whose literature deserves proper placement in the appropriate section of the bookstore. Perhaps Borders could learn by Barnes & Noble's example, as noted in a recent infertility blog post online. This blogger describes how infertility books were placed under Women's Health and Pregnancy/Parenting near the Children's section:

Barnes & Noble, I applaud you. I have bought, I don't know, ten books on infertility in the last 18 months or so, and nothing has made me feel more crappy than having to pull a copy of "Infertility for Dummies" ... out from between a copy of "What to Expect" and "The New Age Baby Name Book." I mean, you wouldn't put books about fighting alcoholism next to books about mixology, would you?

I have been a longtime customer of Borders for many years; I would hate to have to take my business elsewhere, much less advise others who are similarly coping with infertility, to a bookseller with more sensitivity toward its customers. I look forward to your response.

Sincerely,
Miriam

The hardest thing I have had to do yet.

For a friend's shower, I decided to buy them children's books. Seeing all the great titles of my youth, flipping through new books (there are so many cool books these days!) - I imagined reading them to my children one day. "When Mommy and Daddy were your age, Cloudy with a Chance of Meatballs was one of our favorite books!" I almost totally broke down into tears, right next to the Little Golden Books rack.

Almost.

Holy "cum hoc ergo propter hoc," Batman!

Allow me to diverge into a moment of logic, Cum hoc ergo propter hoc. Here's what Mr. & Mrs. Wikipedia have to say:

The cum hoc ergo propter hoc logical fallacy can be expressed as follows:

• A occurs in correlation with B.
• Therefore, A causes B.

In this type of logical fallacy, one makes a premature conclusion about causality after observing only a correlation between two or more factors. Generally, if one factor (A) is observed to only be correlated with another factor (B), it is sometimes taken for granted that A is causing B even when no evidence supports this. This is a logical fallacy because there are at least four other possibilities:

1. B may be the cause of A
2. some unknown third factor C is actually the cause of both A and B
3. the "relationship" is coincidence or so complex or indirect that it is more effectively called coincidence (i.e. two events occurring at the same time that have no direct relationship to each other besides the fact that they are occurring at the same time).
4. B may be the cause of A at the same time as A is the cause of B (contradicting that the only relationship between A and B is that A causes B). This describes a self-reinforcing system.

In other words, there can be no conclusion made regarding the existence or the direction of a cause and effect relationship only from the fact that A and B are correlated. Determining whether there is an actual cause and effect relationship requires further investigation, even when the relationship between A and B is statistically significant, a large effect size is observed, or a large part of the variance is explained.

Right.

So, in putting on my Dr. Google hat today, I discovered that Hashimoto's thyroiditis (A) can not only cause POF (B):
"One other cause of infertility in patients with thyroid disease is the uncommon condition of primary ovary failure"

...but POF (B) can cause Hashi's (A):
"Infertility is the result of this condition [POF], and is the most discussed problem resulting from it, but there are additional health implications of the problem... There is also an increased risk of heart disease, hypothyroidism in the form of Hashimoto's thyroiditis..."

*facepalm*

So, my high ATA count and negative Fragile X results are good, but that doesn't mean I can have my own genetic children yet. B/c, and I suddenly realized today, I could have a totally busted ovary regardless. We could be past the point of no return in terms of my own eggs. My guess is that my doc is going to recommend (hooray!) more blood tests on Friday.

Questions for 5/29 Appointment

I'm scheduled to meet with Dr. Gross this Friday at 3pm. Giving my recent blood test results of positive for ATA and negative for Fragile X, I have a good handful of questions. Am I missing anything?

Re: blood results:

1. Do my ATA numbers indicate Hashimoto's or Graves?
2. Are my low TSH numbers a result of the high ATA count?
3. ETA: do ATA indicate I have anti-ovarian antibodies?
   

Thyroid issues:

1. Should I see an endo? Referrals/recs?
2. With such high ATA, is it worth investigating meds like Armour for both T3 and T4 replacement?
3. Lifestyle changes recommended?
4. Natural/alternative treatment therapies, or therapies to use in conjunction with standard medicine?

Impact on fertility:

1. If this is mostly thyroid related, is the POF, in effect, reversible?
2. Timeline for TTC - should we adjust our family planning timeline in light of the cause? Will waiting make it more difficult, or should we make attempts sooner rather than later? (2 months vs. 2 years)
3. Does thyroid disease carry a higher risk of miscarriage? What can be done to prevent this?

Reproductive hormone deficiencies:

1. What can I do to alleviate menopausal symptoms?
2. Should I begin HRT? What do you recommend? Risks? Benefits?
3. Are there any supplements I can take in addition to or in place of HRT?
4. Should I increase/decrease the soy in my diet?

Happy Birthday to Me

In the last minute of my birthday today, I had to squeeze in a post. This weekend has been wonderful. It hasn't been about tests, or babies, or uncertainty. This birthday was a weekend of firsts.

1. I fired my first gun! Arieh took me to a shooting range, something I have always wanted to try, and have been too terrified to do so. It was nervewracking and liberating all at once. For the first time ever firing a gun, I'm not half bad. In that moment when the safety was off, my finger on the trigger, and I was ready to fire the first shot, I thought of only one thing looking down my sights: I will fucking beat infertility and I will take back everything it's tried to take from me.
2. I planted my first garden! It's a clandestine, contraband garden. We live on a college campus, so starting our own landscaping is a bit of a no-no.... except we have a nice secluded patch of dirt near our apartment, so we've claimed it as our own. It's wonderful to have started growing something like this - it was actually A's idea, and so I'm glad we're growing something together. Albeit "illegally" ;) It's mostly marigolds and some salvia.
3. I ate meat on swords! A took me to a Brazilian BBQ with a bunch of our friends and it was a gluttonous sodium-overload of protein. My fingers and toes feel like sausages b/c I'm pretty sure I just ate my entire month's value of sodium. Lamb, pork, "chicken bacon" (chicken wrapped in bacon), beef sirloin, and, for the adventurous: chicken hearts. Did I eat one? You bet your sweet bippy I did! Was it gross? OMG yes, but damned if I didn't pop it in my mouth and take it like a champ! Will I do it again? Fuck no!

In two weeks, I get another birthday gift that we couldn't schedule in this weekend: a spa appointment! I have a half hour soak in a Japanese hot tub with my husband, followed by an hour-long private massage (hubby gets to go home after the hot tub). I can't wait. I had my first massage the week before my wedding, and it was heaven. I've decided I need to splurge on these every now and then.

In looking back over the last year, a lot has happened:

• I moved... twice.
• I started a new job.
  
• We had to give up our cats for my job (one to my parents, one to my sister).
• I thought I had a stroke. Turns out it was just a nasty migraine.
• I got a new car.
• I had my big toenail ripped off by the 66 bus on the way to work.
• A was published 3 different articles for a trade mag in his field.
• Our first friends to get married were also the first to have a baby.
• We celebrated our first anniversary.
• I saw the sun set over the Pacific.
• I played my first slot in Vegas.
• I drove a muthafuckin Corvette convertible on the Pacific Coast Highway!
• I ate *real* sushi for the first time.
• I got a shitty, shitty Dx, but have coped surprisingly well.
• My husband was laid off just hours after said Dx.
• I found my faith after it was lost for a few weeks.
• I fired a gun, planted a garden, and ate meat on swords.

It's been a helluva 26th year. Here's hoping that 27 will be just as adventurous.

*raises glass*

Cheers.

Getting a second opinion?

Before I write posts, I usually like to tag it with labels first; keeps me on topic. I realized, in tagging this, I added "faith" at the last minute... I think I added it more for secular than religious purposes.

All of my major bloodwork is in. I'm sure I will have thyroid and hormone workups done again in another month or so (esp. thyroid, since I somehow went from managed hypothyroid to crazy high overmanaged hyperthyroid in about 6 weeks). I have my meeting with Dr. Gross next Friday; I have a bunch of questions to ask him. Arieh will be there with me again like last time; I feel much stronger with him there and it's good to have a second set of eyes and ears that represents our interests as a couple.

He's currently out of town at a conference, doing some serious networking, as he was laid off the week after I was diagnosed. During his usual evening call-in last night, he suggested that since I have all of my bloodwork done, perhaps I should get a second opinion. Not that he thinks Dr. Gross is wrong, or lying to us, but that it can't hurt to have someone else look everything over. Just to make sure, yanno?

I'm conflicted b/c my doc is pretty top notch, but I can see my husband's reasoning. We try to be thorough people, so a second opinion totally makes sense. He argues: it can't hurt. I argue: it can. After months of uncertainty, even before my Dx and now especially since in trying to find answers as to its causes, getting my autoimmune disorder and Fragile X results back has felt like such a huge weight has been lifted. The clouds have parted, answers I don't totally understand yet have been laid out and illuminated by the sun.

To get a second opinion doesn't necessarily undo all of this, but it casts me back in the dark, throws me back to the beginning- I'm left in the state of the unknowing, anxiously awaiting to either a) hear the same thing; b) hear something different or worse; or c) find out this was all a mistake and I'm just fine. And none of those options seem particularly appealing any you slice it, even the last one (b/c I know stuff isn't fine- I haven't had a period since Christmas).

For those of you out there that have gone through crazy diagnoses or had suggestions for courses of treatment that left you scratching your head: did you seek a second opinion? How did you navigate that with your partner and first doctor?

Staying inspired and motivated

In keeping up with other blogs (I'm slowly getting back on the commenting horse - I will successfully complete an ICLW damnit!), I came across this post at The Hardest Quest. I credit Gil for inspiring me to start my own IF blog, after I read her blog shortly after I was first diagnosed. I came to the whole IF blogosphere via LiveJournal; we both happened to be in the same community and she reached out to me after an introductory post. And the last 2 months are history ;)

In the post linked above, she's generally updating on her pregnancy, and shares this particularly inspiring, beautiful passage:

Hubby has been feeling Petit move as well. Just the night before last, he was lying in bed, arm around me (as he frequently does) and while I slept, Petit kicked him. And last night, Petit made a spectacular show of skills as Hubby's fingers felt every move. For more than an hour, the two of us lay in the dark and giggled and grinned, smiling as Petit reacted to Hubby's voice and the occasional poke. I am humbled by the experience; I wish nothing more than to remember exactly what this feels like. I wish nothing more than to let all of us experience these moments. We deserve it. We ALL deserve to experience this.

We do deserve this, Gil. We do. And that's what I need to tell myself whenever I get down, when I tell myself this is going to be too hard: that this is worth it.

Blood lab results, round 2: finally, some good news!

Dr. Gross emailed me today. The karyotype serum test results are back: negative for Fragile X and the rest of the karyotype looks normal!

After a very long, frustrating day at work, combined with some other shitty news I got at lunch about some other financial related things, this news has been a welcome relief. This means there is an infinitesimally small chance I can still have my own genetic children! I can hardly believe it right now. I have a lot of work to do- I've got a ton of weight to lose and some other things to get in check, namely my thyroid disease; but there's a chance that my one remaining ovary just might have some eggs left in her, and we might be able to coax them out when we we're ready to TTC. I think there are still going to be issues in that we won't be able to make a baby the old fashioned way, but I've pretty much accepted that fact.

The news that I might be able to have a child that is partly genetically mine is so... fantastic. It's overwhelming. I have hope again. I haven't felt anything, really, for weeks and now - something positive.

We have an enormously long way to go, but at least we've got this small hope that I might have eggs left.

losing steam

i've been a bad blogger. i signed up for last month's IComLeWe and couldn't leave as many comments as i meant to b/c i don't have flash on my work computer (yeah, i know i shouldn't be doing all of this at work, but whatever.) by the time i got home, there was other stuff to do, so no comments. i'm wondering if it makes sense then, to sign up for this month's.

i've been peeking into others' blogs here and there, but i've just lost a lot of that initial Dx steam i had a month ago. really, i just kind of feel numb about the whole thing. but i got a great piece of advice from another community, and i wanted to post it here for posterity, b/c rationally, i'm totally on board with it. i just need to let it sink in emotionally, so i thought keeping it here might help to that end:

I can see that you feel guilty that you aren't happy for your friend; as a caring person, it can be such an unwelcomed surprise that you don't feel what you think you should. IF tends to sneak in and chip away at your soul without you realizing the scope of the damage. I go through cycles of emotions, but I learned early on in our journey that I cannot judge myself based on how I *think* I should feel, and just accept what I do feel. It's not good or bad, it just is. There are times I'm discouraged and frustrated by my emotions, but that gets me nowhere, so I give them free reign and eventually they recede. The only emotion I nurture along is hope and happiness, because even though I accept my moments of negativity, I know I am most entitled to my feelings of joy. Hang in there.

you know what, i am going to sign up for this month's ICLW. maybe it'll get my ass in gear.

A quick hello

I haven't posted in a couple of weeks, other than that random thing on the T last weekend. Still no word on the karyotyping. As for the thyroid issue, I'm to stay on the same course. Instead of taking my thyroid med every day, Dr. Gross wants me to skip my Sunday dose.

Check.

Hot flashes and palpitations abound. Sex drive... it's there. Nothing over the top, but here and there mostly. Baby lust? Non-existent. Preggo-envy? Not really. I'm just kind of floating in a sea of "meh."

Haven't slept well this week for a variety of reasons, but none of them really related to stress. I'm just here. I had a couple of sad nights this week, which were quickly dispelled with things like Battlestar, LOST, and a night at the Boston Pops last night. I distract easily, so that's helped. I have zero desire to go shopping for my friend's shower gift(s). I've actually asked A. to do that shopping for me. I'm happy to wrap a gift and pick out a card, but I just don't feel like staring at a printed registry in zero point font to roam confusing aisles at Babies R Us.

Actually, I'm at a point where I don't really know what I should be feeling at all.

thoughts from the red line train

@ porter sq, a young father with a little blond haired blue eyed boy no more than three years old. the father is one of those young geeky types: trim build, spikey hair, thin wire glasses.

the boy, all smiles in the high end stroller. the father sits, begins doting and chatting to his son.

a bouquet of a dozen red roses and baby's breath in the under-stroller storage area. a "happy mother's day" decorative wand in the middle of the velvety red blooms. from the stroller handle dangles a pink and orange striped gift bag, the word MOM across the front. the O is a decorative paper daisy with a button in the center.

@ harvard sq, an old man sits next to them, complimenting the mid-30s father on his sweet boy. they chat casually, a sideways conversation to each other, all the while looking continuously at the smiling boy. i can't make out what they're saying; i'm listening to ludakris on my ipod.

@ central, they leave. the old man scoots into the still warm seat.

@ charles mgh, i glance at the night-lit boston skyline along the charles. the day i stop craning my neck towards this serene view is the day i know it's time to leave boston.

Blood lab results, round 1

As my blood lab bruises from last week are finally fading away, I have one round of results back from the lab: the antibody tests. Still waiting for the karyotype serum testing results. Those apparently take ~21 days to complete. Links go to descriptions of tests. Normal ranges in parens; green = ok, red= something wonky.

• Thyroglobulin antibodies: less than 20.0 iU/mL [20 or less than 20]
• Thyroid peroxidase antibodies: greater than 1000 IU/mL [0-34]
• TSH: 0.06 uIU/mL [0.4-4.50]
• Thyroid stimulating immunoglobulin: 102 [less than or equal to 125]
• Antiadrenal antibody screen: Negative

I've tried my Dr. Google hat, and it hasn't worked much, except that I think I have Hashimoto's thyroiditis? I have no clue. I have an email out to my dr, so we'll see what he says.

Assuming I have no genetic defects re: Fragile X, this is good news for having my own genetic children... I mean, it doesn't really feel like good news at all what with lifelong health concerns, and the fact that my numbers as they stand now usually result in increased miscarriage and IVF failure rates... but at least there might be a longshot chance of me having my own children?

Chalk 1 hash mark in the victory column? I guess?

Why am I not feeling terribly reassured by this?