Looking at me.....

Looking at me you wouldn't know that I'm scared to death.
Looking at me you wouldn't know that I don't know what to say.
Looking at me you wouldn't know that I am a ball of mixed emotions.
Looking at me you wouldn't know that when I'm in the Dr's office, all I do is make jokes.
Looking at me you wouldn't know that there are days, that I'm OK not having a kid.
Looking at me you wouldn't know that some days I can barely get out of bed, because my heart is broken.
Looking at me you wouldn't know that when I'm around a bunch of women that have children; I sometimes feel inferior.
Looking at me you wouldn't think that staying positive is a hard task.
Looking at me you wouldn't know that maybe last week I had 3 doctors visits.
Looking at me you wouldn't know that I was late for work again because I had to get my blood drawn.
Looking at me you wouldn't know that I feel anxious.
Looking at me you wouldn't know that I am angry.
Looking at me you wouldn't know how frustrated I am.
Looking at me you wouldn't know how mad I am at my own body.  The body that was made to create life, the body that hasn't seemed to figure it out yet.
Looking at me you wouldn't know that sometimes I can't even remember my Social Security Number or log in to my computer.....

But looking at me you hopefully know that I am a fighter and I'm not giving up.

Infertility is hard.  I know there are harder subjects, but my subject is that.  It is crippling some days.  It is pain and loss on a level some can't imagine.  It is starting over and over until you've hit rock bottom.  It is finding the courage to start over again and that's just what we did.

This summer, as most of you know we really decided to take our fertility serious.  We started seeing a specialist and we couldn't be more happy.  I haven't updated in a while, so I wanted to update.  I had 3 private messages alone, just today.  The support we have as a couple is overwhelmingly amazing!

The cyst on my pituitary gland has shrunk.  The medicine I'm on for my prolactin levels has worked tremendously.  My levels have gone from very high to very normal.  (I stay on this medicine maybe for forever). (this dang prolactin subject was in a previous blog post)

My thyroid is leveled out.  I've been on the same medicine for probably 6 months now with no modifications.  This is a miracle in itself. (also medicine I'll stay on for forever)

I've had surgery to remove polyps and abnormal cells from my uterus and cervix.  Surgery was successful and really no big deal. To say we weren't nervous would be an understatement, you don't always understand what the nurses and doctors are saying, but we're OK.  I had to miss work which is always a PITA, but maybe a blessing in disguise because I discovered the TV show Suits....... O.M.G.  I may name my first born Louis Litt, JK, JK, but for sure Harvey Spector Johnson.

As of October 12th, we decided to take the least invasive way to conceiving a baby, which is the natural way with a little help from our new friend Progesterone. She should build up the uterus wall to protect a baby!  (long story short).  We could have opted to go to IUI or IVF, but we wanted to see if we could conceive and carry on our own, now that some of the obstacles seem to be out of the way. We have always been able to conceive, carrying is our problem, so I'm crossing my fingers that it helps!  If it doesn't we'll move on to the next step in a few months.  Overall I'm feeling SO MUCH better than I ever have.. not every day is great but there are more good than bad.

Here's to the sweetest news:  Sister Sarah had a baby this past week!  Looking at me, meeting my newest nephew, you'd know all the thoughts in my head because it was written all over my face.  Meeting your little sisters baby for the first time.... there isn't any sweeter feeling.

Say a few prayers for us, send us some high fives and hugs, and know we're sending them right back. Know that one of my nightly prayers is for every other couple experiencing this, that they just have a good day once and a while and that I know you are some of the strongest people in this world!

XO, Amy

  

Month 3 update

Pregnancy journey, month 3 update.  Remember, we don't share this for sympathy or attention.  We share this because we feel that if we can share our story and at help at least ONE person, then our story is worth telling.

We are on month three in on our journey to having a little Johnson.  We've been getting lots of messages and questions on if there is an update, we've been quiet, but not on purpose, just not much going on.  

Everyone told us that this would be a long process, that it wouldn't go fast.   I had this feeling in my gut that it would go fast, I was thinking, heck we've already waited 12 years and had how many losses..... once we took the leap to see the specialist, things would just fall into ace.  However, they haven't.  Don't get me wrong, I feel completely blessed and we BOTH feel that we are in the right hands. We have some answers, even if small, and even if we don't like em... we have more info today then we've ever have.

I've been taking a new medicine to help lower my Prolactin levels (a bit of information about prolactin is below in in our last update).  My medicine at first made me very very tired.  I was super frustrated at that.  I am already super tired because of my thyroid so you can imagine how frustrated I was to feel even more tired.  Most people probably don't know how tired I am every.single.day, but that isn't anyone's burden but my own and if I could get any relief that would be a BIG BIG DEAL.

Now fast forward 2 months... My Prolactin levels and my thyroid hormone levels are significantly lower but not low enough to go on to the next stage of testing.  They want to wait another 2-4 months to re-test.  Of course naturally I was upset and just super disappointed; this was Friday.  We had the day off, we were picking up a new camper, we were going to see some Johnson's and it was just gonna be a much needed long weekend, however I couldn't shake what I had just found out and in true Eric fashion he put things into perspective.  He said "Ame, you have more energy than I have seen in years.  You get out of bed in the morning with out a struggle.  You have pep in your step. You don't beg me to take a nap on lunch breaks, I have your back.... We've got his, things are already SOOOOO much better."  So in my feeling bad for myself mood, he turned it around and I realized that even in the midst of the bad news, or the slow moving hormones, there was some light at the end of the tunnel.

In closing, there really is no update, except I am feeling a bit better, and what they are treating me for, has probably been an issue for years and its finally being fixed. It has probably contributed to my not feeling well and has more than likely played a role in our many miscarriages. We will re-check my Prolactin levels in a few months, and hopefully move on to some more testing.  I have a small procedure tomorrow but nothing big. Keep us in your prayers & send good vibes!  Know that we are are praying and sending good vibes for anyone struggling with the same struggle as us!  Know that if you are expecting we couldn't be more happy for you and know that if you are one of our nieces and nephews, we couldn't love you more!!

XO, Eric & Amy

A little light reading on Prolactin below. (another request we've had) Two causes for my high Prolactin are Prolactinoma, a benign tumor in my pituitary gland that produces too much prolactin and Hashimotos/hypothyroidism.

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What Is Prolactin?

Prolactin is a hormone produced primarily by the anterior pituitary gland, a pea-sized gland at the base of the brain. Prolactin gets its name because it plays a major role in inducing milk production in lactating women. Prolactin levels normally increase throughout a woman's pregnancy, although the levels vary widely in women. Prolactin levels reach their highest level at the time of delivery and then go back to normal around six weeks after delivery (even if a woman is breastfeeding).

When prolactin levels are elevated, the condition is labeled hyperprolactinemia, and these high levels can interfere with how a woman's ovaries function. This can lead to menstrual irregularities, infertility, and sometimes milk release from the breasts, even though a woman is not breastfeeding.

The most common cause of hyperprolactinemia is a non-cancerous pituitary tumor called an adenoma, but the condition can also occur in some people with hypothyroidism. Prolactin can also be elevated in response to environmental triggers, such as strenuous exercise or stress, and in people who take medications that affect the brain chemical, dopamine.

Role in Fertility

Because menstruation and the normal ovulatory cycle often ceases during lactation, prolactin acts as a natural contraceptive that protects against back-to-back pregnancies. That being said, your body's prolactin levels should not be relied upon as proper contraception. Be sure to discuss postpartum contraception with your healthcare provider.

According to this well-accepted theory that high prolactin levels can impair ovarian function, women with elevated prolactin levels who are trying to conceive may experience menstrual and/or ovulatory cycles that are irregular, making it more difficult to become pregnant.

When it comes to prolactin and recurrent miscarriages, however, the jury is still out. A few studies have found elevated prolactin levels in women with recurrent miscarriages. What this finding means, however, is controversial. Some people feel that elevated prolactin may cause miscarriages, while others feel that it is too early to say so definitively.

In Support of the Theory

Given the interworking of so many different hormones in the human body, it's feasible that an imbalance could cause numerous problems. Since hyperprolactinemia may contribute to miscarriages in some women, some doctors may check a woman's prolactin level and give medication to lower the level if it is elevated. 

In the case of recurrent miscarriages and prolactin, one older study found elevated prolactin levels in women who had two or pregnancy losses. When these women were treated with a medication called bromocriptine (that works to lower prolactin levels) in their next pregnancy, there was an 85 percent live-born rate compared to the untreated women who had a 52 percent live-born rate.  

These findings have not been verified in a large-scale study. But, because the treatment is thought to be safe, some doctors test for and treat elevated prolactin when testing women for causes of recurrent miscarriages.

In Opposition of the Theory

The studies that have found a link between high prolactin levels and miscarriage are not large enough to be conclusive.

In addition, researchers still do not fully understand the functioning of prolactin in the body, and many feel that it is too early to say whether or not the elevated prolactin levels in women with miscarriages have any clinical relevance. Other factors could theoretically account for higher prolactin levels in women with miscarriages.

Where It Stands

Some doctors regularly test prolactin in couples with recurrent miscarriages and prescribe medications, such as bromocriptine or cabergoline, to reduce the prolactin levels. These medications appear to be safe to use during pregnancy and are commonly used for women with infertility from hyperprolactinemia. That being said, there are no formal recommendations to test for and treat prolactin in women with recurrent miscarriages.

June update after 1st two appointments

Hey friends!

Lots of people have reached out to us..... and here I am to fill you all in!   I can't begin to tell you how we both have all the feels.  I also can't explain how much love, prayers, hugs and good vibes we feel.  What I'm really blown away by, is by the women who have reached out to say, "Hey Ame, I've been in the same boat, and it all worked out" or the women who have reached out and are going through a lot of the same stuff.  This literally BLEW my mind!  The saying of you never know what someone else is going through... well if that ain't the dang truth!  I was actually hesitant to post another update to respect Eric's privacy and maybe I was almost feeling that I wasn't being sensitive to other women by sharing our story, but the response from Eric and other women has been overwhelmingly supportive.  Some people can talk about this subject, some can't.  Neither is right or wrong.  However if I can talk about it and it helps just 1 person, then its worth it.  So here we go with the actual update:

I LOVE MY DR & NURSES. (One of my nurses is from Gillette, WY!  I knew who she was immediately and I bet I haven't seen her in 15-20 years, what a SMALL WORLD!!)

I can tell a weight has been lifted off of Eric's shoulders... some relief that everything will be OK. (this makes me extremely happy and tingly inside!!)

Eric still doesn't like needles, even when they aren't going in him... he still can't handle it.

Eric can play a mean round of farming on his cell phone when his wife is being picked and prodded. 

I don't mind driving to appointments a couple hours away, because it gives my mind a break and Eric ACTUALLY DRIVES!

We found out that Eric needs to take some vitamins and take a little bit better care of his heart!  We all should; right?  And for me, they want my TSH (Thyroid Stimulating Hormone) levels to come down a bit more and we found that my Prolactin level is high.  (Google it if you want the details, not that scary but enough to make you think and enough info to really make sense when you are in my shoes). Related to my Prolactin levels we discovered that I have a small cyst on my pituitary gland.  This is nothing to worry about but it may be causing some of my irregular periods, night sweats, tiredness, forgetfulness, etc.  The nurses are not that worried about it, I just gotta take a new medicine and get a follow up MRI to make sure its not getting bigger.  (I have decided I really am not a fan of MRI's)

So really, not much has happened yet, but then again a lot has happened.  We know stuff today that we did not know before, and things have been tested that never were. We are also away from excuses, we are on to what is actually causing the problem.  I mentioned that Eric is feeling a little lighter.. I have to confess, that so am I.  I'm tired and worried all the time, but I'm feeling a little lighter.  I can't believe how much we've learned in such a short time and how much the doctor talked with us and how many reasons or ideas he had on what was going on with us.  He was also filled with so much heart and so sensitive to the fact of why we were there.  It was amazing.

I think with in the next week or two we will have the next round of poking and prodding! 

Thank you everyone for following our journey and loving us!  XO, Eric & Amy

My new hashtag should be  #coachandbearhavenoideawhatsabouttohitthem

HOLY MOLY

Guys!

Its been WAAAAAAY tooo long!  Like almost 2 years to long.  I guess life got a hold of us and we have been a bit busy!     

I'm here to tell ya, I'm back and I'm gonna be blogging for the next few whatever's as we venture into our new, scary, and hopefully life changing adventure. An adventure that many/most people do not talk about, but I'm here to talk about it.  I'm gonna talk about the ugly, scary, fun, and truth.  I'm gonna talk so that others don't have to, and I'm gonna talk so that others know they aren't alone.

Over the past 2 years, we've experienced a few more miscarriages.  No real answers why, lots of dr. appointments, lots of feeling sorry for myself and lots of mixed feelings.  Lots of thinking maybe this parent gig isn't for us, but ya know the more I watch Eric with our nieces and nephews and the more time I spend with the nieces and nephews and friends kids, the more I just keep thinking that we have to be parents.  We just HAVE to be.

As we entered into another summer and another year with just Eric and I, I felt a feeling of loneliness and maybe a little sadness.  I really don't know if it was either, but I just knew I was looking for more.  Our original thought was we'd add another Doodle.  We actually put a down payment down for another one, we had him secretly named and we were ready to bring a third Doodle home in the fall.  Boy that was exciting, but it wasn't really what we were looking for..... we'd love one and will eventually get another but not this summer, we have bigger things to figure out.... like maybe a little person.......

About a month ago, I went to a standard doctor appointment on a standard Wednesday and had my standard labs done.  I got the same results that I get every week.... your thyroid is slow, you need to lose weight, you need to lower your stress levels, maybe we should put you on some depression meds and lets up your thyroid meds AGAIN.  I was mad, I was so mad I thought I was going to put a hole through my jeep door.  I drove my normal 30 minutes back to work after the appointment and I still wasn't calmed down.  I just kept thinking... I know life isn't fair, but give us a break, someone at least tell us if something is wrong.  Someone tell me if we are going to have kids or if we aren't.   That day for some reason all of a sudden I decided that a standard doctor appointment just wasn't going to work.  I was done settling.  Settling for standard appointments with so so results.  I was done settling with just getting another Dood.  I was done settling with the "no answers".  I was done.  I was absolutely 100% done.

That same day I told Eric all my thoughts, fears, feelings, and he shared all the same feelings (not always easy to do, and often time just ignored because it is such a hard subject)....... fast forward almost exactly a month..... a month, boy a month goes fast.  Fast forward ONE month and we have learned everything there is to know about our insurance, learned about medical codes, medicines, treatments, weird medical terms and are starting our adventure tomorrow at a specialty clinic in South Dakota.

First step, figuring out what and if anything is wrong with Eric or myself.  It'll be a long day. There will be lots of tests, lots of questions, lots of needles I'm sure. We won't sleep much tonight.  Too many emotions.  Even as I'm typing this, I'm thinking that maybe I was just kidding and maybe wanna wait a few more years, but I'm not gonna let my fears and nervousness stop this thing we seem to have started.

I'm hearing that after tomorrow we are going to be excited.  It's been a long long time since we've been truly excited about something!  I have butterfly's in my stomach and I know Eric does too.

Wish us luck, everyone say their prayers and stay tuned!

I truly hope that by me sharing our story it helps someone else, and gives them the courage to talk about their loss or their hopes and fears.  I don't want anyone anywhere feeling alone!  I also hope Eric doesn't kill me.

XO, Eric & Amy