the new website

Well, after much brainstorming (and brain-clogging), talking to friends, and writing down idea after idea on paper. I finally came up with a name for my new website: ReproRenegade.com.  It seems my little sassy joke of a signature the other week actually stuck with me!

My husband didn’t like the name, but since I liked it and I am now officially a “renegade,” I went with it anyway.  He said it reminded him of someone sneaking through a yard at night to repossess a car.  Okay.  I can live with that.  In fact, I DID intend the tagline to play up the “repo” connotation: “One woman’s unrelenting quest to repossess her fertility.”  So there!  I still think it works.  And if it doesn’t, it’s too bad now because I already paid for the domain!

So, I invite you to check it out: http://reprorenegade.com/  Tell me what you think, suggest improvements, forward it to others, discard it as the dumbest thing you’ve ever seen – anything! 

I am hoping to turn this new website into a pretty regular blogging platform, and will use wordpress.com to run copies of the posts as well.  *Hopefully* … if all goes according to plan :)

Thank you again to everyone who has supported us in our baby-quest.  We wouldn’t be here without the encouragement and care you have provided to us in many dark days.  We are so very, very blessed.

Starbucks gift card winner!

I am happy to announce (and I apologize for the delay) that Kim S. is the winner of the Starbucks gift card giveaway!

Kim, I really liked the idea of using “Beyond Dead Ends” somewhere in the blog concept.  I want to thank everyone who gave this idea thought and entered a suggestion!

Kim, go ahead and send me a message with your mailing address, and I’ll get it to you ASAP.

Have a great day, everyone!

why “reproductive immunology”?

Did it happen?  Did your eyes glaze over yet?  Hang in there with me — I want to make this relatively painless!

If you’re not a science person, that’s OK.  I just want to make a distinction here between what “was” and what “is to be” (like doctors endorsing cigarettes to doctors condemning cigarettes!)  You see, when I found out that reproductive immunology existed, and that it was its own field, entirely different than the reproductive endocrinology that is commonplace, I knew I was going to have a story to tell.

And here’s where the rubber meets the road: for the woman who has struggled with infertility, miscarriage, or repeated failure with current treatments like in vitro fertilization, it may actually be very important that she knows this distinction exists.  Because most fertility doctors are still not using reproductive immunology, and when they tell that woman they cannot help her, they are handing her a ticket to a dead-end.

What if that dead-end doesn’t have to stop her?  Wouldn’t that change her whole life?!

This is where I feel I am.  I’ve been handed that dead-end ticket so many times – and for me, I know it’s many fewer times than the women who’ve tried even harder than me to have children.  Many of you have struggled to get pregnant at all.  Infertility can be a very sad, lonely road to walk.  So if there were a way to get off that road, wouldn’t you throw yourself at the chance?

Here’s the thing: how are women going to know they can get off that road if no one tells them?  That’s where my story is coming in (I hope, anyway!).  That’s why I told you about my “stepping stones,” my trip to New York (parts one and two), and my bloodwork.  That’s why I am hoping to develop a site just to talk about this new discovery (it’s not too late to enter my giveaway contest!)

And so, until I figure out the details for that site, I’ll continue to post here.  I’m hoping to share about statistics of success for reproductive immunology, and to peel back the layer of mainstream medicine that most of us aren’t seeing beyond.  I’m no doctor, but I have an experience I’m not going to be quiet about.  So sit tight – and pray for me if you have a minute.  I need wisdom, and I need a lot of it!

One more nugget for you before I go: did you know that the current protocols (which my Pittsburgh fertility specialists use) for treating recurrent miscarriage are from 2001?  Doesn’t eleven years sound like a long time to you in the field of science and medicine?  It’s time to step it up, docs!  Ladies, let’s be there for one another, because most of the time, it’s we who help each other when the doctors have let us down.

Until next time —

Your Friendly Neighborhood Repro Renegade (haha, I just felt like I needed a signature there! … and we’ve been watching a lot of Spiderman.)

photo credit: jollyboy

Starbucks gift card giveaway – enter here!

All right.  Here’s what it is, folks.

I’ve been driving myself bat stuff crazy for two days straight trying to come up with a name for a new website.  I need help!

That’s where you come in, and enter also my cheap, unoriginal way to get you to help me!

All you have to do is read the rest of this post and leave your comment to be entered to win.  The prize is a $10.00 gift card to Starbucks — I know, I know, it’s not much, but it’s ten dollars more than you have right now right?  And being that this is my *first ever* giveaway, I’m starting small and you’re just going to have to sit tight.

Here are the parameters:

1) I want to start a new site to showcase whatever this is that I am beginning with reproductive immunology and its potential to heal me of recurrent miscarriage.  I want to be able to tell the world: “Here I am, and yes I am following an ‘experimental’ path, but it sure is getting me a heck of a lot further than those other specialists did.”  Or something.

2) It has to be cool.  It can’t have some dinky name like “My Reproductive Journey,” or “Blogging About My Uterus.”  (Those are extreme examples.  Bottom of the barrel examples.)

3) I prefer not to use the hackneyed infertility/baby blog terms such as – well, “infertility,” “baby,” “womb,” “pregnancy,” or “miscarriage.”

4) The name of the new blog/site will tell the average passerby that I am on some sort of journey or project that is being facilitated by an untypical doctor (there are only a handful in the whole country) in a newer field of medicine.  It should convey hope, movement in a direction, personality, and courage.

Maybe I’m trying too hard, but I feel strongly that if I am helped by this approach to reproductive health, then other women will be also.  I want to develop a site that is professional, helpful, relevant, and … well, hip.  I’m here to document a journey, and though I’m just one woman, we are capable of changing the world when we follow what’s right :)  I would be honored to have your help kick-starting this new venture.

Leave a comment below (or three, or 50!) and I will choose from the entries no later than Thursday, Aug. 23rd, at 10:00 p.m.  The winner gets said gift card to Starbucks, my gratitude, and the gratitude of all those people who don’t have to click on a blog called “My New Womb.”

For your consideration and reference:

Dr. Jeffrey Braverman’s Reproductive Immunology Practice

The Alan E. Beer Center for Reproductive Immunology

Wikipedia’s very short reference page for Reproductive Immunology

15 vials of blood

I think it was 15, anyway.  After the technician drew my blood on Wednesday, I definitely had a stack of 10 vials of blood sitting there.  My husband had about 5 – honestly, I didn’t count, but it was a lot for him.  (He was such a big boy :)  )

The bloodwork kit from ReproSource Fertility Diagnostics arrived by FedEx on Tuesday.  We had to call a couple of labs to make sure they would do a blood-draw for an outside lab.  The local hospital would not, but I Googled “Quest Lab” and found a Quest Diagnostics partner nearby who said they could.

Inside the box, there were three other boxes, one for each place the vials are going.  I did not need to open these boxes.

Kitty helped.

The local lab charged $10.00 per person to perform the draws.  Not bad at all, considering our third option was to have ReproSource hire a mobile phlebotomist to come to our house and charge $50.00 per person.

The vials are going to three places:

1. Rosalind Franklin University of Medicine and Science– North Chicago, IL
2. National Jewish Health Immunology & Flow Cytometry Lab (ADx Lab) – Denver, CO
3. ReproSource Fertility Diagnostics, the referring lab – Woburn, MA

As you can see, Dr. Braverman ordered a very thorough immunity panel on us.  We had to have our blood drawn anytime between Monday through Thursday so that a weekend wouldn’t interfere with transport and labwork — the blood had to be viable for these tests.  We also had to have it drawn together since some of the tests require mixing our blood.

Here, we see another huge difference between “regular” fertility specialists and the work of a reproductive immunologist.  No other specialist ever tested me for any of these things.  Just for information’s sake, they were:

1. FOX P3 (CD4+/CD25+/Fox P3)
2. RIP (modified)
3. TH1/TH2 Cytokine Ratio
4. NK Assay
5. HLA Panel
6. CBC with differential
7. LAD
8. T-cell Subset
9. KIR Receptor
10. another HLA Panel on my husband

And, um, please don’t ask me what any of that means.

Hopefully, we’ll get some results by the end of the month, and Dr. Braverman will call me with his recommendations for treatment.

I don’t know how many times you might hear me say this, but it is SUCH a relief to be in a place where you feel like you can finally relax and let the doctor do all the work.  I can set aside all my books and notes and Internet searches, and just let the man find what’s wrong.

I don’t ever want to forget how God has answered our prayers in getting us here.

more new york, or, why I always bring maps

Walking in Soho

Two weeks ago, my husband and I thought we were soooo funny as we slammed AAA for being an institution of the past.  “Like, who needs a TripTik anymore, you know?  I have this thing called Google.  And a GPS.  And a cell phone.  And shall I go on?”

We were put squarely in our place last week when we desperately needed good maps for our trip to Manhattan & New Jersey.  Since AAA wouldn’t sell me any maps, I put a plea out on Facebook, begging someone to help us.  One friend cajoled me for wanting such an old-fashioned thing, but I’ve always loved maps and hate not having them.  Hubby has teased me during many a car trip when I don’t listen to the GPS or when I question its motives.  (Secretly I harbor a slight distrust of everything it says – for good reason.)

Spidey giving me the business in F.A.O. Schwarz.

Before we left, a friend of mine did collect some AAA contraband for us – we met in the parking lot like two CIA informants exchanging valuable data.  I later chowed some humble pie while reading the very knowledgeable AAA Tour Guide in the car, discovering such modern wonders as a ferry terminal, restaurant reviews, and detailed descriptions of how to spend a day in the city.

The nail in the coffin was when my GPS committed treason and tried to take me to Brooklyn instead of the Guggenheim in Manhattan.  I gave the Manhattan map to my mom and said, “Get us there – you’re in charge of this now!”  In fact, I used that daggone map so much I hardly ever put it away in my bag.  Alright already.  AAA, you saved our hind-ends, you non-dinosaur, you.

Waiting in line outside the Guggenheim Museum.

Continuing from yesterday’s post about the first part of our trip, on Friday we went back into the city for a second round.  I debated internally for a while, wondering if I really wanted to front the cash to get back into Manhattan again, then decided we needed to live it up while we were there.  After all, I had no idea when we’d ever make it back!

We relaxed a little that morning, having no timetable except to get back to Maryland sometime that evening.  My mom, son and I took a leisurely breakfast in the hotel lobby – he watched Sponge Bob while Mom and I got on Facebook and drank coffee.  We went for a swim in the hotel’s heated pool, then went back upstairs to get ready.  My son practiced irritating everyone while running around the room in his undies, and in due time we were ready to go.

We decided to drive into the city that day since riding the ferry the day before had been a $72 round trip for the four adults.  Parking garages in Manhattan are outrageous, but I felt like a bargain shopper when it came to only $38.  I didn’t mind driving in the city either, as my mom was navigating with said AAA map and I had 3.5 years of D.C. commuting under my belt.

The Guggenheim Rotunda.

Consulting the AAA Tour Guide again, we decided to split up — Mom and Hubby took our son to the American Natural History Museum, while my sister and I drove to the east side of Central Park for the Metropolitan Museum of Art and the Solomon R. Guggenheim Museum.  These things were not like D.C. in that they were not free.  Chaaa-ching.

I am not even a pseudo-fan of abstract art, but I love the architecture of Frank Lloyd Wright, who designed the Guggenheim.  Being there just made me happy.  You aren’t allowed to take pictures from anywhere but the first level, but I was glad to have at least a few to take home.  I did enjoy the impressionism collection, and the portrait photography of Rineke Dijkstra was beautiful.

About the time that I was cruising the gift shop, I got a text from my husband saying our 5-year-old son was “losing his mind,” so the museum visits came to a speedy end. Thankfully, the Guggenheim was small enough that I had seen the entire collection.

My sister and I met up, walked past Central Park, and went back to the parking garage.  There she is, that little cutie.

A peek into Central Park.

With a little help from the GPS and my mom’s navigating skills, we went back to New Jersey through the Lincoln Tunnel, and got right on the turnpike without incident.  I was pleasantly surprised to see that New York’s 4:30 p.m. traffic was nowhere near as bad as D.C.’s.  I had figured we would sit within two miles of the city for the next hour or so, but we hardly hit any back-ups at all.

And now, we wait for bloodwork to be done, results to come in, the doctor to call, and then to hear about treatment and costs.  We are in a very hope-filled place — finally.

… And maybe, just maybe, I will consider a AAA membership.

“we will find it” – the new york journey

“You have loosed my sackcloth and clothed me with gladness.”  (Psalm 30:11)

The Rotunda at the Guggenheim Museum

 

What a wonderful trip to New York we had.  I have to admit, I was a little apprehensive about the idea a week or two ago, given my history of “bad luck” and “omens” in NYC (an old college thing I really don’t need to get into), but the Big Apple has redeemed itself for me.

Last Tuesday, I filled out my online patient questionnaire for my August 15th phone consultation with Dr. Jeffrey Braverman, a reproductive immunologist in New York.  Much to my surprise, he called me about an hour or so later, even though it was only the 7th!  I said, as the kids were running wild through the background, “Oh!  I didn’t expect your call today!”  His reply was a very friendly, “Most people don’t.”  I can only assume he goes ahead with phone calls as soon as he has read the medical history and has a free time slot.

On that phone call, he told me that he didn’t think my MTHFR genetics were causing me to miscarry, as that would have caused every pregnancy to fail.  I felt a slight disappointment inside, but then he said that he definitely thought there was something immunologic going on.  He told me to go ahead and come to New York, maybe go see a Broadway show, and let him worry about the rest.

Dinner at Da Gennaro in Little Italy.

When he put me through to his scheduling desk, they told me that they had an opening on Thursday (as in, two days away), or that they could see me on September 4th.  I whispered to my husband that they could see me then, and he said, “Go for it!”  So commenced the scramble – the phone calls to family, the Internet searches for hotels and how best to manage getting in and out of Manhattan, the packing, and finding someone to watch the cat.  My friend with a AAA membership got me two tour guides and a series of New York/New Jersey maps.  Wednesday morning, I drove my two-year-old (whom I love dearly but who rarely behaves) an hour west to meet her Nana and spend a few days with her and Grandpa.  Wednesday evening, we drove to Maryland to spend the night at my mom’s.  She and my 17-year-old sister came to NYC with us the next day.

Thursday, August 9th, we hopped into the car – me, my husband, our 5-year-old son (who expressed his enthusiasm best when he said, “I’ve never been to New York in my whole big life!”), my mom, and my sister.  I am so grateful that these two ladies came along.  It would not have been the same without them, and we’d probably be lost in Brooklyn to this day.

We drove from their house to Port Imperial in Weehawken, New Jersey, to take the ferry across the Hudson River.  It was windy and hard to get a picture, so eyes closed is what we got.

Crossing the Hudson River to midtown Manhattan.

 

From the ferry terminal, we rode a free bus to the corner of 57th Street and 5th avenue, one block from F.A.O. Schwarz.  I had memories of being there as a kid and was really excited to take my son.  Unfortunately, it is much smaller these days (only two levels), but he still had fun picking out a couple of battle droids.  From there, my husband and I rode the subway to 23rd Street to go to Dr. Braverman’s office, while my mom and sister took our son to Central Park.

Sure, a picture with you is definitely worth $2.00!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The meeting with Dr. Braverman was great.  I couldn’t have asked for anything better and I wouldn’t have changed a thing.  I am not even sure if I have fully comprehended the amazing thing that occurred there.  It’s still sinking in: a doctor told me he would help me.  A doctor me he could help me.  A doctor said, “Whatever’s wrong, we will find it.”  He knew what he was going to test me for, and he knew how to fix it.  A doctor told me he would be able to treat me, and that I would have more children.  Oh my word!

All the other doctors have left me hopeless, waging war against unknown odds… sending me out the door with no words but “Keep trying!”  Telling me that I will have more kids but not being able to tell me why I keep failing at it.  The more I have read from women like me, the more I hear a resounding frustration with the current medical approach to recurrent pregnancy loss.  In fact, it’s not even very “current” at all, since the mainstream protocol among reproductive endocrinologists is based upon guidelines from 2001.  A lot has changed, and it’s time the American College of Obstetricians and Gynecologists caught up!

Dr. Braverman was a very likeable fellow, and seemed to me more like your average, well-dressed, New York resident than a doctor!  He didn’t wear a white jacket, he made jokes about me having violent tendencies (upon seeing my husband’s arm in a sling – a softball injury, just for the record!), and pulled an iced coffee from a paper bag while we sat with him.  Falling asleep during our appointment “would be embAArrassing,” he said (and you have to put that New York accent on the “A,” just like everyone does when they say my name, “SAAra.”)

Looking at my history, he told me he was going to test me for a few different things: HLA genes, HLA antibodies, inherited inflammatory conditions, and some sort of sugar test.  I won’t attempt to explain what HLA genetics is all about, but if you’re interested, you can read about it and watch his video on their Web site.  It basically affects how a mother’s body recognizes the baby – whether as “self” or “foreign.”  And if the right message doesn’t get through, the immune system will go after the embryo just as it would a virus or cancer cells.

When I asked him his thoughts on me being sick with the two 16-week miscarriages we had, he said that it’s logical I would have felt ill if my immune system had been activated.  All other doctors said, “Usually it’s a good sign if you’re sick,” but in my gut, I always felt it was related to my losses, since I wasn’t sick with the children who survived.  For once, a doctor resonated with what I had always intuited as a mother.

Before I left, Dr. Braverman also performed a sonogram to measure blood-flow in my uterus.  He showed me on-screen that the blood was having a hard time moving through the wall of the uterus.  He said the vessels there seem to be very restricted, and it’s a finding we need to keep in mind for the future.  He explained that inflammation, brought on by an immune response, would constrict the vessels, or that it could be a sign of endometriosis.  It will require more analysis later.

We left his office that day very encouraged and feeling hopeful for the first time.  It literally does feel like a “sackcloth” has been removed.  A weight has been lifted; we aren’t carrying around this heavy cloak that feels like impending death for all future pregnancies.  And I don’t just say that to be dramatic or something… it’s just how it feels when you’ve miscarried so much it almost becomes a way of life.

And so, as we left the city that night, having gorged ourselves on homemade food in Little Italy and traipsing through Soho and Times Square, I felt at peace.  The city, scarred yet standing resilient above her ashes, looked beautiful and vibrant to me.  The breeze on the top of the ferry was cool and refreshing, and I thanked God.  I thanked Him for leading me to this doctor, for the fun memories we were making, for the beauty and fullness of life we were enjoying.  New York now holds happy thoughts for me … and now it’s up to her – she’s got the key that may figure this whole big thing out.

“But You heard the voice of my pleas for mercy when I cried to You for help.”  (Psalm 31:22)

stepping stones

The plot is thickening in the B family household.

(that’s us, just to be clear)

So much so that I have no choice other than to follow the compulsion to write it down.  My hope is that I can serve a twofold purpose: 1) to keep friends and family (and anyone else who’s interested) informed of our situation, and 2) to put my story out there in case it can help another person get to the place they need to be.

It gets really confusing nowadays when I try to explain my situation to someone.  I start talking about genetics and fertility specialists and I see their eyes begin to glaze over.  That’s when I know I’ve left them somewhere below the stratosphere and I am talking waaaay over their head.  Heck, I’m mostly talking over my own head.

It’s hard to even know where to start, but the background is this: I’ve been married to my wonderful hubbie for 8 years, and in the past 6 years, we have had 5 miscarriages and 2 children.  We have a 5-year-old boy and a 2.5-year-old girl.  Two of my miscarriages were pretty late, at 16 weeks.  The others have been earlier (8 weeks, 5.5 weeks and 10 weeks).  I’ve had 3 miscarriages in a row since my daughter was born, which now puts me in the category of having “recurrent miscarriage” – a problem that only about 1% of women have (so they say).  After my third miscarriage, which occurred last summer, I went to two different fertility specialists in the Pittsburgh area.  Neither of them found anything “wrong” – which is good in the sense that it ruled things out, but bad in the sense that I can’t be treated or helped.

I wrote extensively about the spiritual side of last summer’s 16-week miscarriage, as well as my severe problems with postpartum depression/anxiety, on this blog.  You can check out the archives in June, July and August of 2011, if you’re so inclined.  This year, I want to talk about my utter frustration with doctors and what I have found in the way of help.  God’s faithfulness is apparent in both aspects!

The first specialist I saw was a doctor at the Western Pennsylvania Hospital in Pittsburgh.  His specialty was in Maternal-Fetal Medicine and High Risk Obstetrics.  He was very thorough and kind, and did a really nice job pretending he didn’t hear my then-4-year-old son when he blurted out “He looks weird.”  He tested me for a few factors that can affect pregnancy outcomes — to get boring and scientific on you, the tests were: 1) random glucose, HgbA1c (hemoglobin something or other), platelets, anticardiolipin antibodies, and lupus anticoagulant.  All I know is that these are tests for metabolic and clotting/autoimmune factors, and they were all normal.

The doctor explained that many pregnancies fail due to “random chromosomal errors.”  In fact, about 2/3rds of first trimester miscarriages are due to these sorts of errors.  So essentially, I was just unlucky, having lost three pregnancies in the first trimester at that point.  (Even though 2 of them were discovered at 16 weeks’ gestation, both of those babies measured around 13 weeks, which is still in the first trimester.)  The solution?  Keep trying.  Doc said I still had a pretty good chance of carrying to term – maybe only about 5-10% less likely to carry to term than the average woman.

That was in July 2011.  In December 2011, after talking to a friend, I decided to give Reproductive Health Specialists in Pittsburgh a call.  I was able to get in quickly and met with a very nice woman doctor who spent about an hour with me.  She knew the doctor I had seen first and said he did a very thorough work-up.  She did not wish to order any further testing, except for a sonogram to examine the anatomy of my uterus.

Uterus is such a funny word.  Go ahead and say it a few times.  Right?

Anywho, my uterus was fine, which ruled out anatomical abnormalities that could have contributed to pregnancy loss, such as the presence of a septum or other abnormality that could interfere physically with the development of a baby.  So that’s good, too.

This doctor’s recommendation was the same as the first doctor’s: keep trying.  Take your prenatals and keep trying, and chances are you will carry to term again.

Oh by the way, “Good luck!”  And, “Sorry about your luck!” … “It’s just so unfortunate that you’ve lost two babies at a really rare stage in the game and one baby before that, but keep trying!”  … Ha…  I suppose that little outburst makes me sound bitter, but I’m really not… I’m just poking fun at the very unfortunate nature of the situation, and cracking inappropriate jokes sorta makes me feel better!  In all seriousness, the doctor was very understanding and very nice, and reassured me that I am not alone.  She said that about 50% of women like me simply do not get answers.  She also spent some time talking about genetic codes and how very little we (as humans) know about them.  She mentioned that there is much about our knowledge of the reproductive process that is still “crude.”  Imagine that – humans don’t know everything!

So after I saw her in December, I miscarried again in February.  It was a very early one, and for that I was grateful.  (You don’t have much time to get attached to the idea, and recovery is non-surgical.)  I called her office back and told them what happened.  After consulting with the doctor, they called me back and told me her recommendation was the same.  Keep trying.

Here’s where I really start to see the Lord laying out all those stepping stones for me.  Yea, it’s not easy, and I can’t tell you why things have to take so long, but I just try to focus on His faithfulness to me in a very broken world.  But the next step for me was to go to an integrative medicine facility, Medical Wellness Associates in Jeannette, PA, where I met with a doctor who ordered several more tests for me.  I wrote about the findings here.

One thing that doctor found was the MTHFR gene mutation.  MTHFR is a genetic mutation that about 30% of the population has.  It stands for “methylenetetrahydrofolate reductase.”  Whatever.  All I know is that it affects the way we metabolize certain vitamins like folic acid and B12.  So my new doc put me on special forms of both of those.  It made sense that maybe I was losing babies because they weren’t getting the proper nutrients and maybe they had neural tube defects from lack of folic acid.  No one can say for sure, of course, but it’s certainly better to be on the forms of the vitamins I can absorb, rather than not be getting enough of them.

So all was well and good until I miscarried again in July.  I was 10 weeks along.

Here, too, the Lord provided a great mercy for me.  1) I already knew about having MTHFR; 2) I had begun doing some writing about my experiences and had ordered a book for research purposes; 3) the book came just a few days before I miscarried, so I had it at home while I was recovering.  The book is called Avoiding Miscarriage by Susan Rousselot.  Devastated by yet another inexplicable loss, and having my nerves fried from the trauma of it once again, I set to reading this book and quickly found inspiration to keep looking for answers.  It truly was a Godsend.

The long and the short of where I stand now is as such: I became convinced that I needed to find a reproductive immunologist.  I started by making several phone calls to the specialists I saw before, but this field is newer and most specialists fall in the category of endocrinology.  (Some endocrinologists do take a more progressive approach to immunological causes, but the ones I saw did not.)  I even went back to Reproductive Health Specialists, but was not encouraged.  If anything, I knew I’d gotten my answer about which doctor was not going to help me.

My sister-in-law also has MTHFR and was very supportive, telling me that she was treated for it, and she feels very confident I can have more children.  Talking to her was another kindness from the Lord, particularly because the doctor at RHS had so discouraged me.  But all was not lost and I got back in the saddle!

For the sake of space, I am summing things up tremendously, but I wanted to get this all down before I make my very exciting next step.  This week, I am traveling to New York City to see a reproductive immunologist, Dr. Jeffrey Braverman.  He is only one of a handful of reproductive immunologists in the country – and maybe the world, for that matter!

I did a preliminary phone consult with him today to make sure he thought he could help me, and he told me he felt confident he could.  He was reassuring, telling me that he sees women like me many times a day, and he will figure out what’s going on.  Looking at my history, he said he felt sure there is something immunologic going on, and not to worry – come to New York, and he will do all the figuring out.  This was the first time I’d ever heard anything like that.  For the first time, I’m starting to feel like I can relax a little and let someone else finally do the work for me!  Hopefully, this will mean no more pedaling without getting any answers.  No more hamster wheel.  Hopefully :)

This morning, I prayed to the Lord that He would guide me, and maybe even “this week” that He would bring me to the right doctor.  Once again, I am thanking Him!  (And am really looking forward to taking my son to the biggest toy store in the world :)  )  I will definitely try to keep posting.  I just know I am not the only one out there frustrated with the current lack of answers for recurrent pregnancy loss.  Here’s hoping this momma can help another momma out.

waiting in the dark

I attended a funeral yesterday for a beautiful, successful, straight-A high school student of my former school in Maryland.  My younger sister, who attends the school now, was devastated by this girl’s death; she described her as “the nicest person.”  Everyone knew her and loved her.  She played sports all year round – cross-country, basketball, lacrosse and others.  She was a stellar athlete, already making varsity teams in her sophomore year.  At age 16, she clearly had tons of friends and was always making people laugh.  And yet we gathered by her grave yesterday because she took her own life last week.

The community is completely undone.

When we went to her viewing, we could barely find parking, and had to squeeze our way through to get a glimpse of her.  For the funeral the next day, the church parking lot was overcrowded and cars were jammed along residential streets.  Inside, it was literally standing-room only.  Many people couldn’t even get through the doors from outside, much less into the sanctuary.  Teenage girls had “tattooed” their beloved friend’s jersey number on their hands or on the backs of their legs, and held one anothers’ arms in groups as they walked to the graveside.  My sister and I were some of the first to get to the cemetery site, and we watched and waited as hundreds of people kept coming and coming – there seemed to be no end to the masses of mourners.  It was like watching a slow river flow… except it was made up of silent, bleary-eyed people dressed in black.

I cried many times yesterday for this young girl, her sorrowful family, and this community of people that is wounded so deeply.  Having experienced suicides in our family, I am pained for the family most of all.  Losing a loved one to this kind of death throws all sorts of questions out there.  Most of them won’t be answered.  Mostly, those of us left behind just mourn that we couldn’t do something to save our sibling/son/daughter/parent from the suffering they were experiencing.  We would rather have given our eyes or limbs than to see that beloved one die.  It is one of the worst pains a human being can experience.

And yet, I wouldn’t ever want anyone to judge this young girl for what she did.  There will be moments, or even days, of feeling angry – yes.  But ultimately, we have to remember compassion.  We have to remember that a person must be in deep, inescapable sorrow to actually take their life.  If you’ve not walked in their shoes, then you don’t know what they were living.  If you haven’t ever struggled with depression, then you can’t begin to imagine how very dark and scary the world can seem.  Please, return to compassion for her – and return to compassion for her family.  Remember that they would have loved to do something for her if only they knew.

After a suicide in my own family, someone spoke the most unkind words that I’ll (unfortunately) never forget.  They implied that the family knew it was coming.  In essence, they were saying the family should have done more.  What an ignorant, insensitive thing to say.  Don’t EVER say anything like that.  If you ever hear anyone say something like that, gently remind them that they assume too much and that they don’t understand what really happened.  Because what really happened was a person in pain hid their pain and didn’t ask for help.  And what’s happening now is a family is blown to pieces and will always, always, always, for as long as they live, regret that they couldn’t stop them.  Don’t ever assume you know what could have or should have been done.  Just be there, and be silent, and learn to walk the road of sorrow with the sorrowful.

To the family, I wish I could say it will be all right, but those words are pretty empty.  I wish I could embrace them and make everything feel a little better, but that’s the job of the Lord, and His healing is something that comes day by day.  I can say it WILL get easier, but it’s going to take time – and maybe more time than you would like.  But it will get less raw, and the tears will stop coming every day after a while.  Grief is a shadowy figure that lurches close behind us, but he does begin to let up after a while.  And you also have a Savior who is greater than grief, and greater than pain.  Jesus died to take away the sting of death.  He died to reconcile us to the God who made us and loves us.  You may have lots of questions for God, but please don’t turn away from Him.  He loves you so much and wants to bring comfort to you. If all you can do is pray, “Help,” then do that.  If all you can do is read the same Psalm over and over, then do that… but let God in.  Look for Him… He is eager to comfort you.  His word is “living and active,” and is a living, healing balm.  If today, you can’t bear to talk to God or even think of Him, try again later.  He will wait for you.

“He has made my teeth grind on gravel,

and made me cower in ashes;

my soul is bereft of peace,

I have forgotten what happiness is;

so I say, ‘My endurance has perished;

so has my hope from the Lord.’

 

Remember my affliction and my wanderings,

the wormwood and the gall!

My soul continually remembers it

and is bowed down within me.”

 

                     Lamentations 3:16-20

getting somewhere (part 2)

So I left off talking about my decision to try a gluten-free diet.  (See previous post here.)  I remembered one more “clue” that led me to my decision to try this.  One day, I was at an appointment with my physician’s assistant who prescribes my medication for me.  I asked her if she could tell me anything I could do naturally or nutritionally to help with anxiety, and one of the things she said was that some patients feel better on a gluten-free diet.

It’s like there’s all these doctors out there helping us try to feel better, but they each only have one piece of the puzzle.  It’s essentially taken all these months to finally gather enough pieces to start to see the big picture.

When I noticed how much better I felt off gluten, I really started feeling like I was getting somewhere.  Here I had struggled with anxiety off and on for months, and by making one dietary change, it disappeared.  I had never felt so in control of my own health!  It was the first time I’d been able to do anything that gave me hope I was moving in the direction of feeling better permanently.  Before that, I was helped by medication for the anxiety, but it still came and went.  And, I’d been given no treatment to end the recurrent miscarriages.

Feeling better off gluten truly solidified my belief that our overall health is intimately tied to what we are feeding our bodies.   Even the Berenstain Bears know this!  It’s like Dr. Grizzly explained in The Berenstain Bears And Too Much Junk Food, when Mama Bear took the whole family to the doctor because their eating habits were terrible.  (My kids love this book!)  Check it out (yea, I scanned it. Is that weird?):

Of course!  It’s so obvious!  “A system for food that lets us take in the nourishment that gives us energy and keeps all the other systems healthy.”  DUH.  How could our health, mood, energy, chronic illnesses, cancer, fertility, behavior, and everything else NOT be related to food???  Our brain gets nourishment from what we eat.  Our nerves are fed by what we eat.  Our energy comes from how our bodies metabolize what we eat.  Toxins in our bodies that lead to cancer and autism and chronic illnesses come from our environment, which includes our food!

So I stayed off the gluten for the full three weeks I had to wait for my results.  And when I went back for my results, they confirmed a gluten sensitivity.  (By the way, it is likely that a very large portion of the population has gluten sensitivity, but most doctors don’t know the  proper ways to test for it, and most people have no digestive symptoms.  But if you feel better off gluten, chances are you should probably not be eating gluten!  I not only experienced relief from anxiety, but also noticed I had more energy and less muscle aches.)

The Food Panel also revealed sensitivities to many other foods.  I was glad I had a leg-up on the elimination of wheat, because it was about to get even trickier.  As you can see on the results below, any black line that extends into the “Moderate” or “Avoid” columns denotes a food to which my body is sensitive.  So, for an indefinite period of time, I am to avoid dairy, eggs, beef, gluten, peanuts (oh noooooooo! my peanut butter!), soy, and mushrooms (never liked them anyway).  The idea is to give my body a break from these foods, then maybe (or maybe not!) add some of them back in once enough time has passed.  I was also given guidelines that would improve anyone’s health (though not your ease at the grocery store): Avoid sugar, MSG, preservatives, dyes and colorings, and high fructose corn syrup.  Try to buy organic if possible, and look into getting a water filtration system for your home.  … It helps to concentrate on what I CAN do and what I CAN eat.  But that doesn’t stop me from being at a loss many times!

The foods in blue are foods that are allowed.

Again, I see the Lord’s perfect timing in this.  There is no way on God’s green earth I would have been ready for this regimen back in September.  I had to get here in the right time.  When I did go to Medical Wellness Associates, I was already doing things like using coconut oil and sea salt, avoiding refined flour and sugar, and I saw the value of unprocessed foods.  It’s still been a huge challenge, but I was already in possession of the knowledge about WHY I had to do these things.

In addition to the food sensitivities my doctor found, the other blood tests came back with some new and helpful information.  I am still not sure why no other doctor screened for these things before, but it sure reinforced my idea that you have to be your own advocate.

1. THYROID

As I wrote yesterday, my primary care physician tested my thyroid and said it was normal.  I think he did a “TSH” test, which stands for thyroid-stimulating hormone.

My new doctor did a full panel on my thyroid.  The script for my bloodwork said “Thyroid panel- hypo/hyper: T4free, T4, T3, T3uptake, TSH.”  I couldn’t really explain what that means, but when the results came back, the T3 was too low.  My doc said it indicated an underactive thyroid, and prescribed some supplements to help get it back on track.  Avoiding wheat would also help the thyroid get back on track, because, according to him, wheat is “infamous” for disrupting the thyroid.

2. MTHFR GENE MUTATION

Yesterday I mentioned the MTHFR gene mutation and its role in folic acid uptake.  When I got my results, it turns out that I have one copy of the C677T mutation and one copy of the A1298C mutation.  Whatever that means, all I know is that I am positive for the MTHFR mutation.  So it’s possible some of my pregnancies ended in miscarriage because the babies were not developing well neurologically, due to folic acid not being available for absorption.

My doc gave me a special form of folic acid to bypass the problems this mutation causes.  Apparently, gene mutations such as this one are common in the population.  Genes have a lot to do with our predisposition for disease, as we know.  It would go without saying then, that they affect how a person’s body reacts to foods or environmental assaults.  One of the things they do at Medical Wellness Associates is gene testing as it relates to autism.  They can then formulate a specific dietary and supplement regime to help autistic children recover or improve.  Pretty amazing stuff.

3. VITAMIN D

My vitamin D level was low also.  One of these days, I’d like to read more about vitamin D, but I know it’s really important for lots of stuff.  How’s that for scientific?  Well, that’s what Google’s for, right? :)  In listening to my doctor, I did manage to write down that vitamin D is related to immunity, depression, heart disease, our bones, and dopamine levels in the brain.  A friend who also visited this clinic said his doctor related vitamin D to a hormone – its functions are that important.  It also has a role in fertility.

4. HEALING THE GUT

A fourth thing I came away from Medical Wellness with was the importance of the gut in regulating immunity and overall health.  My doctor put me on “Mega Probiotic” to help restore the bacterial flora in my intestines.  He said that my gut has been weakened by the constant barrage of offending foods, so we need to give it a break from them AND help it heal.  I recently read in Robyn O’Brien’s astounding book, The Unhealthy Truth, that “Scientists now believe that some 70 percent of our immune system is located in our intestines,” and so it is our immune systems that suffer when our guts don’t have the beneficial bacteria they need to thrive.

Now, you might think, “I am as healthy as a horse!  I never get sick, so I must not have any deficiency in my gut.”  And I would have thought that before too.  But I’ve come to see that immunity doesn’t just mean how well we fight off a cold.  The health of our gut also has to do with allergies, asthma, eczema, fatigue, brain fog, sleep disorders, bloating, gas, chronic runny nose or congestion, recurring ear infections, auto-immune diseases like rheumatoid arthritis and vitiligo, and countless other health conditions.  I may not be saying all of this exactly right, since I am not a doctor myself, but I am convinced that our gut is like our “second brain” – it regulates that much!

In conclusion, I have finally found some explanation for the mystery of why my body has not been optimally healthy.  Nobody can actually tell me for sure why I have miscarried so much, but I believe these “strikes” have probably been working against me for a while:

Strike 1: Gluten sensitivity

Strike 2: Underactive thyroid (made worse by gluten)

Strike 3: Vitamin D insufficiency

Strike 4: MTHFR gene mutation, disrupting folic acid absorption

Strike 5: Questionable gut health, possibly affecting nutrient uptake

We all know there’s no crying in baseball!  And three strikes, you’re out… not sure what happens when you have five!  I hope, that by removing the “strikes,” I’ll get my health on course and hopefully have better pregnancy outcomes in the future.  I believe I’ve finally found a doctor who is extremely well-educated on the processes of the human body and how they relate to food, environment and genetics.

Finding the integrative medicine facility was HUGE for me.  All along, I’d had this nagging feeling that there must be something more to my health than what my doctors were looking for.  It felt like my nutrition and diet must have a role.  I had no proof.  All I had was intuition, or a gut feeling, or an instinct.  Ultimately, I believe it’s the Lord who gave us a natural ability to listen to our bodies, and I believe it’s the Lord who leads us down the right paths if we ask Him.  And I really see His faithfulness in leading me now that I am here.

Thanks for reading… I hope that this peek into my journey may be helpful to someone else someday… or at least provide an interesting story!