And then there was one..

Its been awhile since I blogged.  I started this blog because I wanted to let other women newly diagnosed with POF that if they are feeling insurmountable grief, they aren't alone.  You aren't alone.   However, as time moved on, my desire to focus on my grief decreased.  Summer came and it was full of trips, vacation, and unfortunately some family illnesses.   I felt like I was making progress towards acceptance and was less inclined to focus on the negative.  Then last week happened, my best friend announced she was pregnant.

At the beginning of this year two of my girlfriends  (Jenna and Sara) and I ran off to Napa for a girls weekend (all of us trying for pregnancies with little success).  The Monday upon landing Jenna found out she was expecting.  I was a little sad for myself, but otherwise very genuinely happy.  This past weekend I flew out to see Sara.  We planned a spa weekend away complete with booze, spa treatments, sleep and sun.  On Monday when I landed from my flight home, she texted me her pregnancy test-- 'pregnant'.   Up until this point other people's pregnancy announcements had little to no affect on me.  The minute I received her text I started bawling, in the cab, on the way home from the airport.  I'm not even talking misty eyes, blame it on allergies, tears--nope full on ugly cry face, snot running out my nose and swollen eyes.  I got to my door and just crumpled outside of it for a good bit until I regained my composure.

I feel awful for being so upset that 'she's pregnant and I'm not', I'd like to think I only want the best for my friends (and I do), but this whole experience has me questioning myself.  Out of the last three years of pregnancy announcements why did this one hit me so hard?  Out of all the people I could have been jealous of, why did it have to be my best friend?  I'm hoping this was a one time thing.

On the plus side, I am now finally motivated to pursue egg donation.  Paper work has been completed for a retirement fund loan to fund the treatments (we are looking at financing 30-70k for the treatment cycles, and for us, this is the best path-but its not without its draw backs).  New appoints to start the process have been schedule and I finally feel like I'm ready (and I wasn't sure I'd ever get to that point).  Now to take one last vacation before knocking me up (fingers crossed).

Random Thoughts

-I have looked at the same egg donor profile for over 3 months now.  On paper she is perfect, same sports growing up, same Myers-Briggs personality,  hair color, build, blood type, etc.  I know she will be my first choice when we start perusing egg donors (assuming she's still available).  I want to 'like' (is that the right word?) her, but she's not me and I feel like an asshole for thinking my genes are special.  In fact I know my genes are not special (other than they are mine) and have quite a few flaws in them (micro deletion aside). 

-I am petrified of being a parent.  It feels so weird to be infertile and upset about it and yet, at the same time, be absolutely petrified of being a parent.  I like my life.  I want to raise a child and I know my husband will make a great father but I question my parenting abilities.  Will I be selfless enough to be a good parent?

-I wouldn't mind twins and may prefer twins.  It would be nice for my child to have a genetic sibling.  We are spending a LOT of money on getting me pregnant so, if we only had to do it once that would be nice.  There are only two reason I might opt for a SET one is because twin skin scares the crap out of me and I am vain (see last confession.)   The second is that I would feel like more of a failure if I wasn't able to carry a twins pregnancy to term.   Can't get pregnant and can't carry... I fear I might feel completely broken if that happened.

Out of the blue..

Have you ever had a day where your grief just all of the sudden hits you as hard as it did the first time you received the bad news?  Today is one of those days for me.  I have been at my desk for two hours today trying my damnest to blink back as many tears as possible over my infertitlity.  Its old news, so I am not sure why today is such a hard day. 

I'm starting to wonder if I set myself up for failure.  I set a mythical 6 month date (June) to grieve and get over my lack of ability to have children.  I told myself after June, I'd move on with egg donation.  I would be ready.  June is a month away and I am realizing I may not be ready.  I may not be able to give my grief an expiration date.  As much as I may hope, there may not be a date on the calendar where everything turns to puppies and rainbows.

This blog post is making me feel a little better.
http://www.hellogrief.org/how-did-grief-get-an-expiration-date/

The holding pattern...

I'm not ready to actively pursue egg donation yet, but I feel weird 'doing nothing'.

I know I should start counseling.  I've been to counseling in the past, but this time it feels different.  This time there is nothing to fix.  This time the only outcome is acceptance.  It's been hard to swallow that there is no 'fix' for me.  I'm defective, its as simple and as hard as that.

It feels weird to be on a path where I :kinda: want to move forward and yet I know I am not ready.  In reality I just want the band-aid to my pain.  I feel as if I am in this holding pattern.  The is an  unsettling but not unfamiliar feeling.

Three years ago when I stopped taking birth control I thought I'd get pregnant immediately (ha!).  I lived my life as if I would be pregnant at any point.  I didn't buy dresses or clothes for the next season at clearance sales, I didn't plan trips, I didn't enter races.  I did spend a lot of time staring at pregnancy tests missing that oh so vital second line.  I was miserable.  By the second year I started living as if *this* was my last time to do anything because I'd be pregnant at any moment.  I bought, bought, and bought some more.  I traveled, I jumped off big rocks, I lived my life, and I was happier despite not being pregnant.

Photo Courtesy of 1 Eye Photography 

Now I am back to being afraid to live my life.  Afraid to plan for the future.  If we pursue egg donation there is an 80% success rate.  If.

Girls just want to have fun...

Three of my close girlfriends have reached that point in their lives now where they are now actively trying for children.  As such we planned one last hurrah.  A girls weekend to Napa :)

As with all good girls weekends, we laughed, we cried, and we drank too much.  Our favorite wineries of the trip were Cranes, Kitchak, and Aonair Wineries.
We discussed fertility and infertility (one girlfriend has completed 5 cycles of Clomid (PCOS) and one is just starting to actively try to conceive).   I was touched when each offered me her eggs (money can't buy friends like these!).  But overall it was a nice escape from the heartache of infertility.

The day after we landed my girlfriend who has completed 5 cycles of Clomid found out she was pregnant.  I couldn't be happy for her (honestly) but I still get sad at the realization that I will never get the 'Pregnant' test without donor eggs. 

The end of an era...

I once read a post from a blogger (sorry I forget who!) that really resonated with me.  For the past few weeks I have struggled with WHY having my own genetic child was so important to me.  I realized for me, its not just my genes I wanted to pass on, but those of my parents, my grandparents,  and everyone before me.  Its the one way in which I could keep everyone, even myself, from dying.  Our branch of the tree would continue with my children and their children. 

Source

Last week I was told that the branch would end with me.  My doctor called to tell me I have a weak X chromosome.  My memories may live on in others, but my genetics never will.  I'm devastated.

Edit:  My wording was a poor choice (and so was the doctors) its not Fragile X.  After meeting with a genetic counselor I learned its a deletion of a portion of my second X chromosome.  Its also not Turners.  Its rare enough to not have its own name.  

Its amazing what a difference

a good doctor can make.  I met with RE #2.  I immediately liked him.  I felt that he actually cared about the 'whole' me and not just the getting me pregnant.  Unlike the previous Dr, he wanted me to get a bone scan to ensure I don't have to much bone loss (a side effect of decreased estrogen).  He is also willing to prescribe HRT (yay!).  He even gave me hope.  In his opinion, the immune system is attacking the maturing follicles.  He theorizes that my odds for getting pregnant may be improved by being on birth control for three months and then heavily monitoring me once I come off to do well timed sex or an IUI.  In theory this would give me one shot at getting pregnant.  Three months is a long time to wait for one shot.  But one is better than none.  I'm still getting a third opinion, but at the end of this month. I now know I will at least have a path forward.

Family, Religion, and Infertility

Since being diagnosed with POF I've been on a roller coaster.  I received the diagnosis call on Christmas Eve.  Here I was surrounded by family during a joyous time of year.  I didn't want to ruin Christmas for everyone else and quite frankly I didn't know how to tell anyone else.  So I did what any well-adjusted adult would do (tongue in cheek), I drank.  Lets just say the details of Christmas Eve past 8pm are a little fuzzy. 


Since then I've had good weeks and bad weeks.  Bad weeks involve a few too many not-so-happy/happy hours and too little time at the gym.  Last week was a very bad week.  I finally summoned the courage to tell my (Catholic) family my diagnosis.  (For those who don't know, the Catholic Church does not condone fertility treatments, much less egg donors).  Fortunately, both my sister and mother have been very supportive and my sister immediately offered her eggs.  She's a doctor, so I know the kid would have great genes!  


My mother relayed the diagnosis onto my father.  My Dad is the 'most catholic' of my immediate family.  (My mother grew up Lutheran, I wouldn't consider myself Catholic, and my sister isn't a practicing Catholic, I suspect she'd consider herself a very liberal Catholic).  My father is the only one I haven't talked to and I keep waiting for him to reach out and tell me I have his support.  I'm starting to think this is one area where I won't have his support.  I'm guessing he'll remain quite on the matter.  I have always had my family’s love and support in everything I've done and its salt in an already open wound that if I peruse this path, I may not have their/his full support.  (If we peruse egg donors I plan on being open about it). 


All of this has opened my eyes to another path, adoption.  My family is VERY supportive of adoption.  As in a large percentage of my extended family (aunts, uncles, cousins, etc.) are adopted.  I spent last week reading the adoption blogs, looking for an answer, how to choose between the adoption and egg donors.  I'm feeling lost.


Today, I am reminding myself that I don't need to make a decision right now.  Today, this week, next week, and the weeks after I’m going to stop focusing so much on the ‘what-if’ my eggs don’t work and start focusing on hope. 

Denial...

Its not just a river in Egypt.  Today we (Aaron and I) had a follow up appt with RE#1 (more stories to come on RE#2 and RE#3).  My initial blood work showed no abnormal signs auto-immune or otherwise.  (Yet somehow she forgot to order a test for Fragile X and adrenal antibodies, WTF?)  We then met with the egg donor coordinator and the finical consultant.  (Finical consultant, that's what they call the poor person who tells you that even selling your kidney will not pay for the upcoming costs you're about to incur.)
None of these meetings surprised me.  Aaron, turns out, has not been living in a state of acceptance but rather one of denial.  I feel like a horrible person because there is a small part of me that is happy to see he is as heartbroken and upset as I am. 

Just Call me Dr...

Not really, not at all.  I've spent the better part of the last week reading every medical article I could find on POF/POI.  I have my list of questions and my list of experimental treatments I'd like doctors to pursue.  (Now to find a doctor who is willing to try something other than donor eggs).

Link here to my favorite articles that I've read.

My plan of attack: ask for AOA (anti-ovarian antibodies) testing.  (Beware the is very controversial and results need to be interpreted with accompanying information to be accurate).  If this test is positive I'd like to try three months of corticotherapy before an IVF (study, case study, case study ).  If the results are negative than I will continue on HRT and hope that -that is the solution (case study, study).  Now to find a doctor who wants to use me as a lab rat (in a good way).

Through reading all these articles I have come to the conclusion that if I am not seeing results and a return to ovulation after 9 months I *should* feel confident about pursuing egg donation.  Please know this is a HIGHLY personal decision.  I'm an engineer, numbers and statistics give me comfort and have help me to form an path forward that right now gives me hope.  In 3,6, 9 months I may feel differently.  There are case studies out there of women who have had success in a return to ovulation after 4 years of treatment.  (case study), for me, four years is to long a time to not peruse other options.

Feeling Old

I just bought

I'm 30 and I just bought a book on menopause.  Holy Hell.  The side effects of menopause have not been fun.  Night sweats, hot flashes and my personal favorite, vaginal dryness.  BTW WTF I'm 30, I should not be typing these things?!!?!  I will be asking my RE to start me on hormone replacement therapy this week.  The good news about this is that it will help with the side effects while not impinging the possibility of getting pregnant.

 Primary Ovarian Insufficiency Overview and HRT

In fact there are two blogs from women who got pregnant with POF while on HRT:

Fizzy Feet
My bum ovaries

And here are a few medical case studies on the treatment of POF/POI with HRT.

Hormone Replacement Therapy as treatment for POI/POF
Case Study: HRT as treatment for POF/POI
Another Link on HRT Therapy as Treatment for POF/POI

In other news, me and acupuncture do not get along.  Each time I attend a session I come away with even more bruises.  The latest is a nasty painful bruise on my abdomen, its dark purple/red and about the size of a quarter.  Its making wearing anything with a waistband painful.  I'm also really concerned that this week's treatments will leave me with a bruise on my forehead (the only place I have yet to bruise).  I'm not sure how I'll explain that one.....

All alone! Whether you like it or not, alone is something you'll be quite a lot!*

Infertility, the disease you suffer alone.  It's a surprisingly isolating disease.  When we first married we had a few sets of great friends.  As time moved on they married, they got pregnant, they had children.  Their lives evolved to include social activities often revolving around their children (children's parties, baptism, play groups, etc..).  We stayed where we were at, married and childless.  Our lives didn't evolve and we were left behind.  I often wonder/worry that we've become that awkward couple that no one wants to invite out, because what do you say to the infertile?  Can you ask how their treatments are going, what they foresee the future holding for them and then how do you respond to their answers?  Can you talk about the joy your children bring you?  There is no good answer because everyone is different.  My answer to all of this is yes other people's would be no. 

I think the worst part of infertility is even when you have friends going through the same thing, its still isolating.  It's still hard.  I'm hurting so much that I've subconsciously built these walls to avoid being hurt anymore.  In the back of your mind, you know someone's treatment has to fail, someone has to be the negative statistic.  You don't want to be that person, and if you are, you don't want to lose yet another set of friends whose lives are about to evolve.  

The grief and misery is suffocating at times.  Right now, for me, is one of those times.  I don't think I've gone more than three days without crying ever since the diagnosis.  The energy it takes to 'hold it all together' though the work day is exhausting.  Its not like telling my bosses, 'oh by the way- on Christmas Eve I was told I can't have genetic children' would make them understand my misery. (and I really wouldn't want them knowing that I am and have been trying to achieve a pregnancy anyway...).  So I just keep swimming, trying to keep my head above water and putting one foot in front of the other.

*(Credit Dr. Seuss for the quote)

Infertility is the new 'Do I look fat'

What know one tells you is that infertility is hard on a marriage

Infertility is hard because no matter the diagnosis, both parties are hurting, both parties are looking for a rock, looking for reassurance, looking for hope.  Both parties imagined having a child with their partner, his good looks and her eyes, etc.  I have to remind myself of this constantly.  I'm losing the dream of a genetic child, but he's also losing his dream of a daughter like me.

We are both grieving and at different stages, its hard.  I'm still in the denial/bargaining stages (more on that later) and but he's more at the acceptance stage.  He's completely understanding of my feelings and my need to grieve longer, but its still hard.  I want him to be right beside me in the bargaining stages.  I want him to tell me its going to be 'ok' that my body will suddenly start working again if I jump through all these hoops.  But he's practical and accepting of the diagnosis, so he won't. Instead he tells me he understands my need to jump through all these hoops (diets, pills, acupuncture, etc).  Some days I wish he would just fart unicorns and rainbow for me....

Rolling with the punches

All this time I thought I was one of the 'lucky ones'.  See my insurance plan has infertility coverage (state mandated).  It covers 6-IUIs and 3-IVFs.  I knew the donor portion of the plan had no coverage but that was a cost I could pocket without too much heartburn.  Today I read the fine print on the plan, coverage only exists for participants who have an FSH lower than 19 on cycle day 3.  I'm devastated.

Source

Here I was rolling along my merrily way thinking that I have the insurance coverage so at least I can try an IUI or IVF cycle with my own eggs before moving onto donor eggs.  Now, I'll be saving every penny just to try an donor cycle.  I tired to call the insurance company but like any insurance company I couldn't find a person who actually understood what FSH really was and what the condition really met.  (Some insurance websites state that the FSH requirement is just the requirement for coverage to use your own eggs).  Also, since I don't have a cycle, at all, I can never truly have a day 3 FSH test.  I'm either doomed to be constantly battling the insurance companies or to doomed to no coverage at all.  Either way my plan to try with my own eggs may no longer be viable (just like my eggs.. ha....).

Week 1: The Infertility Diet begins

I feel like the Beggin' Stips dog.  Bacon. Bacon. Bacon. Bacon.

Source

I finished my two day juice cleanse (fortunately Aaron did a day with me so I didn't have to do it all alone and more importantly I didn't feel the need to do three days).  He swears he felt the juicers high people talk about.  I felt no such thing.  (I should note I ate 2 eggs (at night) and a handful raw almonds both days, there's only so much green juice one can take.)  As a result of the juice fast I am looking forward to all the healthy nutritious food I get to eat today.  At this point, anything is better than another juice!
Since there are only two people in my house and Aaron takes care of his own lunches I'm having a hard time meal planning such that I don't waste any of the expensive-ass-organic-free range- grass-fed- hormone free- fresh food I've purchased.  (It took three grocery stores and a bill of close to $175 (I think)) to get as much as possible to be organic.)   Here is my weekly meal plan.

Day 1
Juice Fast.

Day 2.
Juice Fast.

Day 3
Breakfast:  egg + avocado+tomatoes+onion+black-beans+Cilantro
Snack:         green juice
Lunch:         Salad+carrots+ chicken
Snack: Strawberry Fields Shake
        1 1/2 cups strawberries
        1 banana
        1 1/2 cups fresh orange juice
        1 teaspoon lemon peel
        1 teaspoon raw coconut oil
Dinner:     Salmon+rosemary+ roasted sweet potatoes
Snack:         raw lightly salted almonds

Day 4
Breakfast:  egg + avocado
Snack:         green juice ( I bought these from Whole Foods)
Lunch:         Salad+roasted carrots+ chicken
snack:         Green Shake
            1 banana
            1 handful spinach
            1c strawberries,
            1 tsp chia seeds
            1/2 an orange +1/2 c water
Dinner:        taco zucchini boats
Snack:      Fruit

Day 5:
Breakfast: egg + avocado
Snack:  green juice
Lunch: Salad+tomatoes+onion+black-beans+Cilantro+taco meat
Snack:    Blueberry "Milk" Shake
        2 cups of almond milk
        2 bananas
        1 cup blueberries
        3 dates, pitted or 1 tablespoon of honey
        1/2 teaspoon vanilla extract
Dinner: roasted broccoli+quinoa+ baked chicken

Day 6:
Breakfast: egg + avocado+ tomatoes+onion+black-beans+Cilantro
Snack:  green juice
Lunch:     Salad+carrots+ chicken
Snack:    Cherry Vanilla Bliss
        1 banana, frozen and broken into pieces
        1/2 cup cherries, pitted (fresh or frozen)
        1 cup almond milk
        2 tablespoons cocoa powder (preferably raw)
        1/2 teaspoon vanilla or 1 small piece of vanilla bean
Dinner:    Spinach sauteed with garlic+almonds and Pear and Delicata Soup  Recipe Here

Day 7:
Breakfast: egg + avocado
Snack:  green juice
Lunch: Leftovers
Snack:
    Blueberry Cashew Crumble
    1/2 cup blueberries, fresh or frozen
    1/4 cup cashews (unsalted and raw)
    1 tablespoon of honey
    1/2 teaspoon vanilla or 1 small piece of vanilla bean
    1 cup water
Dinner: Cauliflower "Rice" Stir-Fry Inspiration

My lazy ovaries..

Today was my first acupuncture appointment.  After some initial paperwork I met with my TCM (Traditional Chinese Medicine) doctor.  He explained to me that when you get a cleaning lady you tend to become lazy.  Well, the same thing happens when you take birth control pills, it makes your ovaries lazy.  So apparently, I'm lazy inside and out.  Hmrph!

Source

I won't lie, the idea of a bunch of little needles sticking into me did not sound appealing at all.  Yet, I persevered.   The doctor had me lay on my back, he exposed about 4 inches on my abdomen (think belly button and lower region) and then exposed my lower legs by rolling up my pants.  He then proceeded to place four needles in a diamond shape on my abdomen, three in each of my legs and four in my head.  (I think, some needles I'd feel a tiny sensation as they went in, others I felt nothing).  He then placed a heating lamp over the four needles in my abdomen.  He left the room for 30 minutes.  During the first 3 minutes I thought the needles were just annoying enough to keep me from being able to relax.  I started some meditative relaxing activities (feeling the body ground down and become heavy, relaxing the jaw by taking the tongue off the roof of my mouth, etc...)  Next thing I knew I was in a psuedo-sleep state and not to happy when he interrupted my rest 30 minutes later.

As part of my treatment plan he gave me 2 different bottles of TCM herb mixes in pill form.  In all, he is recommending 33 pills a day.  You read that right, 33 pills a day. On top of the other 12 supplements I am taking a day.  So in total, 45 pills a day.   I have to urge to point out that I can quit anytime I want, really.
I'm to do acupuncture 2x/week until my period returns.  Since this isn't covered by insurance it'll cost me ~$180/week.  Sigh, that's money I could be spending on shoes, wine, or really nice back massages.  I'm hoping I get a period quickly!

It T'was the Night before

a three day juice fast.  Tomorrow I start the three day juice fast.  For the record I don't endorse juice fasts, in fact, I can tell you all the reasons you shouldn't do one:
http://www.huffingtonpost.ca/2012/03/22/do-juice-cleanses-work_n_1372305.html

However, I have a lot of bad habits I want to break (wine at night and sugar sugar sugar) and I know in the past, juice fasts have gotten me over the initial hump (yes, judge away, I've done one before).  All juice fasts preach adopting healthy habits before the fasts.  Well, this is my last day before I enter into a six month long 'fertility diet'.  So I am not adopting healthy habits today.  Say hello to breakfast, lunch and dinner:

and to my favorite bottle of Champagne (Yes I drank it all, by myself) fuck infertility.

Hopefully by tomorrow I won't mind giving up the wine for another 6 months........ (ha!)

In for a penny, in for a pound.

The New Year's Resolution: giving it my all for the next 6 months.  I don't want to look back on my life and ask 'what if'.  For the next 6 months I am going to give every piece of anecdotal evidence/study/urban legend a try.  (Please note I am not a doctor and I wouldn't call my research thorough, I'm grasping at straws as I have a <1% chance of conceiving with my own eggs.)   After 6 months, I will pursue donor eggs.

-A 21 day Fertility Diet.  Do I think it will help?  Probably not, but it can't hurt right?  I'm following the suggestions on the link below:
Fertility Diet Recommendations

Basically, it boils down to just eating really healthy.  However, I will not be giving up my morning latte and I will be having a glass of wine (or two) on the weekends.  (I have found studies/stories to support the wine, I have yet to find anything to support the caffeine, but I'll keep looking).

-Traditional Chinese Medicine.  I also have an appointment with a Traditional Chinese Medicine (TCM) doctor on Monday. I am not excited about the prospect of acupuncture and studies have shown mixed results as to its effectiveness. Links below with a few articles on TCM and Infertility.
American Pregnancy Association
US News Article

-A 3-day juice cleanse (maybe).  There are a number of unscientific articles out there that point to how much influence the liver has in hormone regulation.  Juice cleanses claim to support liver functions.  After 3 months of holiday parties, happy hours, and work celebrations my liver could probably use a break.

-That Amazon cart full of random supplements has been purchased. (again, I am not a doctor)

DHEA Study about improving Egg Quality
 A clinical study that never happened on CoQ10
Examination of Royal Jelly Studies

-I will be limiting the amount of time I spend working out each week.  Numerous doctors had pointed to my running as being the cause of my infertility.  I will be limiting my running to three days a week until my Half Marathon in the spring.  Other than that I will still be enjoying swimming and yoga 2-3 days a week.  Here's a study that evaluates the effect of exercise on ovulatory dysfunction.

Exercise as a risk factor for infertility with ovulatory dysfunction

My take away from the article:

• people who exercise on average between 8 and 60 minutes per day have a lower risk 
• people who exercise on average more than 60 minutes per day have a higher risk

-I have an appointment with a clinic that specializes in High FSH cases.  It doesn't change the statistics that I am unlikely to conceive with my own eggs, but I'm hoping this clinic will give me the option of trying to conceive with my own eggs.

For those looking for evidence and hope that it is possible to get pregnant despite high FSH, I offer this study:
Three pregnancies despite elevated serum FSH and advanced age