Blessings

There are times when I still cannot believe this is happening, we are pregnant! We have reached a milestone that seemed so far off if not impossible for so long. The truth is I still see myself as having infertility, only blessed with the exception. Infertility and endometriosis are still important parts of who I am and always will be, they have shape me, my husband, and our relationship in ways we could have never foreseen. I like to hope that it has also changed the lives of others if only that they are more aware, understanding, and compassionate towards those suffering from reproductive disorders and infertility. I am not shy about the fact that it cost us a lot to get our miracle baby and that there are a lot of factors that often are left unseen during infertility treatment. Pregnancy is not a complete cure for infertility; I have been changed by this disease in many ways both good and not so good. I will remain an advocate for infertility education and care no matter how many pregnancies and babies we are blessed with.

As for an update on this pregnancy, it has been a wild ride thus far for sure with no signs of slowing down. I wish I could say pregnancy is the best experience of my life, but at this point that would be a lie. I always said I would not complain about pregnancy symptoms because some of them are very similar to those experienced with infertility treatment only with pregnancy it is because hormones are being produced to sustain a new life as oppose to injected hormones with the hope of follicle growth and ultimately pregnancy. But pregnancy brings about its own new challenges emotionally and physically. Honestly for the first trimester I did not allow myself to fully appreciate and take joy in fact that a life was growing inside of me. That sounds a little harsh I am sure but my history of infertility coupled with endometriosis increases the odds of miscarriage greatly. I just could not allow for myself to get my hopes up especially when I experienced bright red spotting between the 7^th and 11^th weeks. I had to continue use of progesterone supplements, yet another reminder that “normal” and pregnancy are not in the cards for me.

            When you are pregnant every woman that has ever had a child seems to tell you their pregnancy and birth stories. Sometimes I feel bad when someone asks how I’m feeling and my reply is, “Not so great.” Morning sickness is normal and for me it has been an adventure, I have to say that I am very thankful for the drug Zofran. Many people have told me I should feel better this trimester, I am still waiting on that. But if this is what it takes to have a child I can endure, vomiting is a heck of lot cheaper than hCG shots. The baby has been doing well and I not only got to hear the heartbeat but hear the baby move. The only concern right now is my blood pressure, it is a little high. I might have to go on medication for that in the future but I’m thankful that we were vigilant and caught it now, so we can better prevent complications such as preeclampsia. As long as the baby is healthy, I am happy.           

This Christmas is going to be great even if finances are a little tight as we catch up from all the medical costs it took us to get this far and to maintain this pregnancy. We got the best gift we could have hoped for, and truly I cannot ask for more. As I reflect on last year at this time, it really is amazing the difference a year makes. Treatments were not going well at this time last year, school had become overwhelming, and I was depressed. Who would have thought all of that would be completely different this year. We are going to have a baby in less than six months, school went better than expected (and I finished finals on time), and I am pretty happy.  My baby bump seems to get bigger by the day and I’ll admit I enjoy showing it off. At the end of next week we will find out the gender, Jeremy is betting on a girl. We’ll see. 

What We Are Expecting...

Last post I mention that our plan to do an IUI in September did not happen. Well, we now know what is to coming next on this journey. My husband, Jeremy made this short video that chronicles our path thus far and what is ahead.
 





I have to thank our long time chiropractor as he is the one that found a combination of supplements I am currently taking. Without him we would not be at this point, and as always though we have planned our course God has directed our path.

Giving Infertility a Voice

Yet again it has been a while since I have updated. Mostly because things have not gone as we had planned the last couple months and also because school is a big priority right now. I am sorry that it has taken so long for an update and that this will not be much of one. I wanted to share a part of Redbook magazine’s No Shame Campaign, call The Truth About Trying: Infertility Stories from Celebrities and Women Like You. It provides a place for women and men to openly talk about infertility and the way it affects their lives. If you have followed my story you know some of the ways this happens, but we are some of the “lucky ones”. We found out early, we have great insurance that covers some procedures, and family and friends that have supported us through this journey. Please take a few minutes to listen to a couple of stories from these women that have struggled with infertility.

            Our story is not yet over and I should have an update in a couple weeks to let you all know what we should be expecting in the future. And remember that one in eight couples struggle with infertility so someone you know is most likely suffering from this disease. Please do your part by listening to the voice infertility is still trying to find.               

Stepping up the Game

     I know it has been awhile since I updated and that is mostly because we took last cycle off of treatments and I decided to give myself a mental vacation from the infertility world. Well, as much as I could. Since, the last go around was unsuccessful we met with a new doctor. We are super excited about this change as we feel this clinic actually sees us as people and most importantly listens to us. It helps that insurance covers some of the procedures there too. After looking at all of our records, the doctor could tell we had been doing all that we could but he was not really sure that the pervious clinic was holding up their end of the deal. I completely agreed. He was very direct and to the point and because all previous attempts were unsuccessful we all agreed it was time to step up the game. In infertility treatment that means IUI, intrauterine insemination.

    IUI is exactly what it sounds like, artificial insemination that takes place inside of the uterus. Good thing is it does not mean a lot of changes from previous treatment. I’ll still do all the ultrasounds, blood draws, and shots but at the end we will go to the clinic for insemination instead of doing things the “natural way.” This is what we assumed would be the next step so we were not surprise, but it is a little disappointing that it has come to this. It is kind of like the finally straw that says, this really is not going to happen naturally for us at all. Insemination makes it sound like a sure thing, which is far from true. Given my situation and current treatment I have around a 20% chance of becoming pregnant during a cycle, IUI will increase our odds to about 25%. I know it does not seem like much but at this point even a half a percent is a big deal. We are hopeful that the next few months will be our time because the step after IUI is a large one. IVF (in vitro fertilization) would hold much higher success rates for a couple our age, but is a lot more demanding in all aspects. It is a multi month journey, with the usual procedures plus egg retrievals and fertilizations. It also comes with a very large price tag and ethical concerns. IVF is still a forbidden land for some, especially specific Christian communities. To be honest it was one of those arguable topics that I did not take a real stand on until it became personal. When I realized that it is a possibility that IVF could be the only way I could carry my own biological child, it did not seem like such a bad thing. We do that often; don’t care until it directly affects us. I can clearly see both the arguments for and against IVF, and know that if our time requires IVF it will present new challenges.  I really hope that is not where we are headed but I cannot ignore that is likely. In the next couple weeks I am going to use this space to look at the ethical, emotional, and mental concerns of both IUI and IVF. 

Can I get a frequent patient card?

         Wow. That describes the past week pretty well, not at all where I expect things to be going. The second week of the cycle is the most drug, ultrasound, and lab intensive. Overall I ended up with 17 ampules of hMG, 4 ultrasounds (3 within 5 days), two blood draws, and one trigger shot. The ultrasounds and blood draws are so frequent now that the obgyn’s office knows me by name and the pathology lab knows exactly where my order is coming from by just looking at me. Things that use to make my blood pressure and anxiety rise are now just another part of my day. That is a place I never thought I would be, where labs and scans filling the calendar is the norm.  

         That was not however the most stressful part of the treatment, that would be working with the doctor’s office. To preserve the integrity of the staff and myself I will not divulge details, but I will say communication is important in any relationship. The result of miscommunication among other actions has resulted and everyone being disgruntle, and ultimately our departure from our currently clinic. It had been an idea we had been discussing for a while and after this week we knew it was necessary. Our insurance covers much more at the other clinic, which will hopefully prevent some of problems we experience with misunderstanding in the past. I think fertility clinic staff would be much more understanding and considerate if they were aware of how much their patients are actually paying for services. And I must say after that was explained to the current clinic they were much more willing to accommodate us and we are very grateful.

       The results of treatment are hard to know because I was unable to have my usual ultrasound tech this go around and the pervious mentioned miscommunication. What I do know is that we had a few good follicles on the left and lots of small ones on the right, however the estradiol were not as high as we would like. Saturday after all the issues came to a climax and an ultrasound was performed by a doctor we were given the okay to go ahead with a trigger shot. We were also given the disclaimer that there is an “increased risk” of multiples. I laughed a little because who am I to be picky at this point? Do I desire high number multiples? No, but I think I would learn to make do.   

Back at the Starting Line

So here we are again, at the start of another round. Last time I updated we were in the middle of a cycle and had just finished the second ultrasound. After a third ultrasound and more blood work, things still were not progressing as desired. Instead of giving up completely the hMG dosage was increased to two injections a day, but it might not have been enough, bringing us back to the starting line once again.
            I know I have complained about endometriosis a lot but part of the reason I do is that I want you to understand that it is a very real disease. I kept silent for years because I believed the lies that I was just weak and everyone had “bad periods”. Not true. When a woman has endometriosis it can take over her life, she’ll miss school/work, avoid social situations, and suffer physical and emotional pain. For a few months after my surgery I got to experience what I would call an endometriosis free life, it was refreshing and exciting but short lived. Now about a year and half later I am almost back to my pre-surgery state. It is a little hard to take especially when it starts affecting others. My husband and I spent the weekend at the lake and I was not a lot of fun because I did not feel well but I sucked it up and put on a good show, I learned to master that a long time ago. The façade could only last so long as my body got the best of me. After multiple trips to the bathroom, which I use to think was caused by IBS – but is more than likely endometrial lesions on my intestines, I lied in bed crying from the pain. When I could not take it anymore I woke up my friend at four in the morning in hope that some fresh air would help. I felt so bad for waking her up and even though I know I would try to do the same for her, I cannot repay her for all she has done along this journey for me. My husband I ended up sleeping curled up in the back of our SUV because I felt better outside. And I am saddened by the fact that things should not be this way, endo is not something we talk about because we are afraid to offend someone by talking about “woman problems”. For that reason research and treatment is underfunded and slow, we have no problem talking about breast but talk about menstrual cycles and people do not want to hear it.  I have had people tell me that my blog is TMI (too much information) but that is part of my point. I did not choose to have endometriosis and I should not suffer because the problems it causes make others uncomfortable, it makes me uncomfortable too. This puts it in perspective, “‎If 7 million men suffered unbearable pain with sex and exercise and were offered pregnancy, castration or hormones as treatment, Endo would be a national emergency to which we would transfer the defense budget to find a cure.”-Nancy Petersen, RN, ERC Advisor, Internationally recognized advocate.
         Now that I am sure you have had enough of my ranting, a little on our current state. I had an ultrasound today which a required a lot of phone calls and waiting, but it got done. I’ll start the injections tomorrow at 1.5 ampules and then get another ultrasound in a week. Praying that this is our time.    

More meds

       Very short update on what is going on. Monday was ultrasound number two for this cycle and it show a little bit of growth on the right side follicles. Since the ultrasound did not show the preferred development we increased my hMG dosage to one and half. Then, Tuesday was a blood draw to check my estradiol levels. It looks like things still aren’t exactly where we would like them to be so that means more shots. We are going to keep up with the larger dose until Friday and check again with an ultrasound and blood draw.

       I have really felt like my life revolves around infertility this week. Waiting day to day for results is nerve racking, I feel like I have to be connected to my phone all day for a three minute call that dictates my treatment. The actual shots don’t bother me much anymore, although I am not sure I will ever get use to the burning sensation of the meds. My thighs do have large matching bruises, a small price to pay if this actually works. 

Waiting for the Other Shoe to Drop

     Well, the past few days have been stressful. At times I feel like it has been weeks rather than days. Last cycle was unsuccessful so we started our eight round of treatment, and we started right away. After much miscommunication with the RE’s office and the amazing compassion of the ob/gyn’s office we got things squared away (between Monday and Tuesday I spent about 2 hours on the phone). This time we are taking a “more aggressive” approach. The ultrasounds started at the beginning of the cycle, with one on Tuesday and another one this Monday. The idea is with multiple ultrasounds throughout the cycle we can watch how my body is reacting to the medication. We start with the injections immediately and I’ll also be getting an estradiol test with the next ultrasound. Estradiol is a hormone that aids in follicle growth among other things. The results from Monday will indicate what the next step in treatment will be, it is rather nerve racking when we don’t know what is coming next.

    I also so herbalist again and it is amazing how she can understand my body. Hopeful the combination of supplements and medications will be the answer. I have not been coping well with the physical effects of this journey. As I have stated in the past my endometriosis is only getting worst and I’ve barely been able to operate this time around. I just keep hoping it is worth it. I hate that all the different mixes of hormones has made me look like a teenager with uncontrollable acne. I know it isn’t my fault and there is not much I can do about it since most acne treatments are not advised for those pregnant or may become pregnant. But as I told Jeremy, I cannot wear a sign that say “I have acne because I am infertile.” Then my weight fluctuates depending on where I am in the cycle. It is only a few pounds but with my small frame I am able to notice even if others don’t. Again, a small price to pay for fulfillment of a dream and some of the less talked about effects of infertility. It is probably obvious that I am not in the most positive of mood at the moment. I keep praying that we are doing the right thing and everything will have a purpose in the end. I’ll be sure to post a small update early next week with what the plan is from here.  

Some Old, Some New

      Yet again it has been awhile since my last update. I had finals to finish up for school and little energy left to do much else. This go around I did a double dose of Femara which I was smart enough to take at night so I didn’t pass out for hours during the middle of the day. That was the old part – taking some pills for 5 days. The new part – injections. I was rather anxious about this part. Even though my husband is a paramedic the office insisted I come in to learn how to give them to myself. It wasn’t anything that Jeremy had not already told me or I had not read and it was a ridiculous waste of money. Nothing I can do about that now. When it came time for the first shot Jeremy was not home and I was working on a paper due later that day which made me even more nervous. Jeremy walked me thorough it on the phone and I was so shaken up that I spilled the dissolvent, it felt like it took me forever to get the medication mixed. When it came time to actually inject, I hung up the phone and said a quick prayer. I worked myself up so much that when it was actually over I thought “That’s it?” Thankfully Jeremy was able to do the next couple so I was more comfortable with them by the time I had to fly solo. We had our normal ultrasound on Friday. I have to thank my doctor’s office again because they squeezed me in between patients because they know how important it is that it is done on specific days and early so the results can be faxed to my RE. I tried not to get myself too excited and at first I really thought it was not going to end well. There were less follicles than previously but there were larger so that was good, but the ones on the right ovary were not quite “ripe.” However, on the left we had one that was just the size we like to see 20 mm. That meant one more shot, the trigger shot. Now we wait yet again.

      On a related note I would like to draw attention to Family Act of 2011, a Senate bill create to aid families with infertility cost, specifically IVF. You can find more information here. I encourage you to contact you Senators and ask for their support of this bill, because 1 and 8 couples suffer from infertility and that means someone you know is living with this daily.

      Also a well know infertility advocate was feature on the Boston news, discussing the fact that infertility does not only affect older women. You can find the video here. I like to point out her correction; she still needs to save $18,000 for her IVF cycle with an egg donor not $1,800 as the segment says.       

Medic! Guest Post from My Husband

How many times have you heard that phrase? It’s in practically every military movie. Medics are called when people are injured, sick, and/or at the end of their rope. We are fixers, there aren’t many things we aren’t trained to handle. When Jenni and I discovered having baby wasn’t going to just happen the easy way, I wanted to cry MEDIC! There really isn’t anything to make the news come easy.
    It
Makes
You
Question

EVERYTHING.

Your mind becomes flooded with questions:
“How can this happen to us? What did we do to deserve this? How much is this going to cost? What are our options? How will this affect our relationship? Where is God in this? Does this mean never or will it get better? Where is the justice?”

I can’t even begin to comprehend what Jenni’s going through……

SO…

We began our journey in infertility. At first it didn’t seem real, almost like we were in a fog. Then the tests came and the fog lifted quickly.  Jenni became a pin cushion and blood was drawn, medications were injected, and she became an excel champion tracking all sorts of things.  I felt helpless, trying to offer moral support and empathy. I wanted to take her place seeing her heartbreak daily because of the unknown. I’ve learned listening isn’t enough, communication is the real cure. At first my words escaped me, Jenni wondered if I cared…which I did, but sometimes my off colored humor didn’t help. I still managed to get her to smile, that beautiful smile I fell in Love with. There are times though when all the pieces fall apart. I’ve learned that sometimes you have to let the pieces fall because there is nothing you can do to stop them from falling, but the greatest thing to do is to be there to help put the pieces back one piece at a time. One day we will be stronger because of this……
“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain” C.S. Lewis
“Experience: that most brutal of teachers. But you learn, my God do you learn.” C.S. Lewis

Hate

Last week my husband picked up a package at the post office, it wasn't very big but it held a lot of hope and cost us almost all our savings. It contained injectables for this next cycle. A little scary. You may remember last cycle did not go well and the nurse told me we might be going straight to the injectables because it is uncommon to not to respond to Femara. Well, it ended up being a combination of the two. I’ll be taking the double dose of Femara and hMG injections, I’m not sure how I feel about that. I am grateful they have decided to take an aggressive approach, but it makes infertility a bit more real. This is not going to be fixed with a pill and one shot.  At minimum it is going to require several shots and pills, shots that I am at some point going to have to administrate myself. I very thankful to have a paramedic for a husband, he could do this with his eyes close (although I won’t let him). But because he is a paramedic at some point he will not be home when I need a shot. So, later this week I’ll make a trip up to the RE’s office to learn how to inject myself, crazy. I realize that there are people that inject themselves everyday with lifesaving medications, this is different. There is no guarantee, no certainty, this is not going to directly benefit my health. Again, I come back to the question, “Is it worth it?” And again, for now it is. For now I’m prepared to do this, I want to do this.

As we keep running this race, I try not to look behind me and see if endometriosis is catching up. After this week I don’t have to guess. It is gaining ground and pulling out all the stops. I have miss school, I have lied in bed curled up in ball, spent more time in the bathroom than out of it, built up a tolerance to my pain medication, and have kept a small hold on my sanity. To add to the stress it’s finals week.  I really dislike infertility. I hate endometriosis.   

Myth: Infertility is God Telling You Not to Have Children

This week is National Infertility Awareness Week and as a way to increase awareness Resolve has started the “Bust an Infertility Myth Blog Challenge.” I have chosen to bust the myth that infertility is God’s way of telling someone not to have children. I picked this topic to address because faith is a large part of my infertility journey and theological issues are kind of my full-time job as a seminary student. I will be speaking from a post-modern Christian perspective, but that does not mean that those of other faiths cannot find helpful information. I could probably write a book on this myth alone, but I’ll try to keep this short and to the point.
            My first response to this statement is, “How you do know what God is telling me?” I,m sure there are a few people out there that can honestly see infertility as God guiding them in a different direction in life, and I do not doubt or discredit those individuals/couples. However, for most of us on this journey it is rather a question of “why me?” and “how do we fix this?” If a person has cancer do you tell her that God is telling her that she is going to die? If someone is in a tragic accident do you tell him that God wanted you to be disabled?  Then why tell an infertile person/couple that God does not want to bless them with children? I believe that God instills desires in our hearts for a reason and for those struggling with infertility one desire is parenthood. Infertility has done a lot of things to my life but one thing it has not done is diminished my desire to be a mom, if anything it has increased it.
            Second, I feel this statement is a direct attack on an individual's or couple's ability to parent. This may be a personal statement more than a theological one but I do not think that makes it any less valid.  When someone hits me with this myth I get a little defensive. With all the cases of child abuse/neglect and shows like 16 and pregnant, I feel like I am being told that these people will make better parents than I would. I realize that this is not the intention of the statement (at least I truly hope not) but you have to understand that a woman undergoing infertility treatment does not always think clearly.
           Lastly, “barren women” have some great company. Imagine if Sarah and Abraham had believe that God would not bless them with a child even though they were told otherwise, and at their age I think they had a right to think that. In fact Sarah’s first response to the promise was laughter, the same response she had when Isaac was born.  Hannah is a woman whose weeping prayers for a child were answered with the birth of Samuel.  Then there is Rachel, her son Joseph was the answer to her pleas. And we cannot forget Elizabeth, the barren woman that was blessed with John (the Baptist). I would say that is some pretty good company. These women did not always believe that they would conceive, but with faith they gave birth to some of the greatest men of the Bible.
         Like I said before I could write a considerable amount on this topic, but I think this will suffice to bust the myth. I truly believe that God will bless us with a child whether that is with the help of fertility medications, IVF, surrogacy, or adoption. I do NOT believe God is telling me not to have children.  

Basic understanding of infertility
Background information on National Infertility Awareness Week

One of Those Days...Okay Weeks

Yesterday was the day we found if the Femara help my follicles reach their full potential on a good timeline. That means another ultrasound, I am getting so sick of doing them but it is necessary. The Femara doesn’t have as many side effects as Clomid but it does have a warning not to drive or operate machinery until you know how it affect you. I was not to concern about this since I only have a 2.5 mg dosage, but come to find out it puts me to sleep like no other. I took a lot of three hour naps last weeks. From the start of our visit today I wasn’t doing well, there was a younger couple in the waiting room that just had a 4D ultrasound done and were gushing over the printouts. I don’t hate pregnant people, but it is defiantly hard to deal with some things like this. I am not usually in the best state of mind before my ultrasounds anyway, and this was sending me over the edge. I even said to Jeremy, “I wish they could do that somewhere else.” It is hard to explain to others that have/are not experienced/ing infertility, and I know it is irrational and selfish but it happens. Thankfully we got call back before I could break down. We are at the point now that they don’t even give me instructions to prep for the ultrasound, we just go straight in there and I do my thing. (I get my ultrasounds done at my ob/gyn’s office instead of my RE’s office because of insurance coverage.) There were lots of follicles which is good, but no dominant follicles which is not good.  I had not given to much hope to the follicles being good this early in my cycle but it was still disappointing. I had told Jeremy I just had a feeling this drug wasn’t going to work.

The call from the RE’s office a few hours later confirmed my suspicions. First of all I was asleep when they called and when Jeremy woke me up I freaked out because I thought I had missed my ultrasound altogether. It was funny after the fact. Anyway, the conversation with the RE office is one I would have rather not had. They were not happy with the ultrasound results, and gave me a couple of options. I could go up there and get a blood test done to confirm the ultrasound – which is pretty much useless. Or we just “cancel the cycle” now, in other words there isn’t anything else we can do this month. As if my hope was not already shatter, she also told me that it is highly unusual for women not to respond well on their first round of Femara. I wanted to tell her that I was the definition of highly unusual. It is possible that we will not even try a second round of Femara and go straight to injectables. That is a big step for multiple reasons. The obvious is that no one wants to have to inject themselves with something and the second is cost. Shots are exponentially more than pills, and then there are higher risks as well. Our RE called it the “triplet medicine,” my friend and I have joked about triplets in the past but with the possibility looming in the future it isn’t as funny. That is a bridge will cross if we come to it, I’ll be happy with however many babies God blesses us with at once. Needless to say, I’m not in the best place mentally right now. It is difficult to get all the good news we did last month and not be disappointed when it doesn’t happen the way we want right away. As much as I know it is not my fault, this is the first time I thought maybe there was something I could have done differently. And I know that is probably not true and I need to be patient, we’ll hopefully find something that works. It gets really hard at times though, and that is part of the reason that many people struggling with infertility chose to remind silent. This seemingly little thing touches every part of our lives. I just have to continue to rely on God to see us through this storm.     

Plan C?

Well, this past week brought a lot of things to consider. We finally saw the reproductive endocrinologist on Monday. I was a nervous wreck, my digestive track was unhappy with me and my blood pressure was through the roof. I have to thank my wonderful friend, Michelle, for making the journey with us. Without her, I probably would have completely lost it in the waiting room and won’t be able to remember much of what the doctor told us. For most the most part we got promising news. The doctor said that my pervious care had been excellent, which made his job a little easier. There are three things that can be problematic when attempting to conceive: 1) sperm 2) eggs and 3) blocked tubes. We know for sure it is not 1 or 3 so it the eggs, something we already knew. He said we could try to figure out the exactly reason why this is but it wouldn’t really make any difference in treatment. As we have already attempted the first option he would use, he indicated if our current cycle was not successful we would move on to Femara. It is a drug that is marketed for breast cancer but has also show to be effective in fertility treatments because of the way it suppresses hormones. One bonus is no side effects like Clomid. We will do up to two cycle of this medication, one on a low dose and one higher. If those are unsuccessful we would move on to injectables. The only problem with injected medication is that the risk of multiples would be increased, something that my body may not be able to handle well. With both of these treatments we would continue with the ultrasounds and trigger shots. He is pretty confident that once we are able to get my follicles to grow at an acceptable rate, we will get pregnant rather quickly. In fact he was hopeful that this cycle would be it. Even though we did not really get any answers we didn’t already know, it was encouraging.     
            A couple days later I went back to the herbalist and after looking at my charts she was really hopeful that this would be our time as well. Everything went as well as it could this month. Needless to say, I was getting pretty excited. That excitement was short lived, as I started to feel the onset of my cycle. The tests indicated my anticipation, that this was not yet our time. And I’ll have to admit that my coping strategy was to check out, I have not dealt with reality for the past couple days. To be honest I don’t what more to say because I have not thought much about it. I just know it means we are moving on to plan C, Femara and another round of hope.       

Insurance Coverage

As I prepare for my first visit with the reproductive endocrinologist, I have been examining insurance coverage. Currently there are 15 states that have some form of mandated coverage for infertility, but that isn’t really as good as it sounds. Ohio is one of the states on the list but there are large gray areas. Ohio Rev. Code Ann. Section 1751.01(A)(7) mandates the following[1]: 

  Requires HMOs to cover “basic health care services” including infertility services, when they are medically necessary.

   Diagnostic and exploratory procedures are covered, including surgical procedures to correct the medically diagnosed disease or condition of the reproductive organs including, but not limited to: endometriosis; collapsed/clogged fallopian tubes; testicular failure

  IVF, GIFT and ZIFT may be covered, but are not required by the law.

So according to the state law nothing beyond diagnostic and exploratory procedures is required to be covered. However, insurance companies always know how to play the cards in their favor. Personally my claims for several diagnostic procedures were denied because my exclusions stated that infertility care and treatment was not covered. So although it was not treatment, they considered it care and could do as they wished.

I understand the controversy on infertility coverage, in most cases it is not a life treating disease but it is life altering. As I try to educate myself and decide what the most economical decision is for our family, I am struck by the argument of those opposed to infertility coverage. Many believe that insurance coverage for infertility will drive up premiums, which seems to me to be the most logical concern. However, reality is the opposite. “Comprehensive infertility coverage may actually reduce premium expense by as much as $1 per member/per month.”[2]  Part of the reason for this is that those that have insurance coverage are able to make the best medical choice not only the best financial choice. Services that those without infertility coverage (myself included) chose are ones that carry higher risks once pregnancy is achieved. Often insurance companies that do not offer infertility coverage can experience higher costs related to multiple births and complications, risks that may have been prevented if other procedures were available to patients.

There were a couple of things that trigger this post. The first being that Maine is currently considering mandated infertility coverage, and I am struck by the misinformed and even hateful comments that people make against it. Many of them are too hurtful to repeat. The second is that Monday I will pay a few hundred dollars, to hear a specialist’s opinion. I’ve been spending the past few days making sure that they have every piece of information they can about me, so that I can get the most for my money. What would you do if it cost that much for you to see a doctor?   

            On a related note, I would like to point out that May 5^th is an advocacy day in Washington D.C. for the infertility tax credit. This bill would create a tax credit for those that are experiencing out-of-pocket infertility expenses.[3] Details are being finalized; you can find more information here.

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[1] http://www.resolve.org/family-building-options/insurance_coverage/state-coverage.html#Ohio

[2] http://www.resolve.org/family-building-options/insurance_coverage/insurance-coverage-facts.html

[3] http://www.resolve.org/family-building-options/insurance_coverage/infertility-tax-credit.html

Shot in the Arm

Well the fifth round of Clomid is finally over, and I have to say it went about as well as it could as far as side effects. I have come to terms with the fact that I just do not sleep well for about a week, a small sacrifice if it works. Tuesday we had yet another ultrasound to check follicle size, they were a little smaller than they would like. I was a little disappointed but had expected the worst and this wasn’t the worst so I was hopeful. Instead of doing the trigger then, I had another ultrasound yesterday. And guess what? I had 3 good follicles, 3! That means I got an expensive shot in the arm, and we hope for the best.
                Regardless, we are schedule to see the RE later this month. And it is just one of those facts that makes all of this more real. I have very few ideas about what to expect, and it will be interesting to be in a waiting room where everyone is there for the same thing. Right now when I go to the OB/GYN it is always a game of I’m not going to stare at you but I’m trying to figure out why you are here, you don’t look pregnant. I think we sometimes forget that gynecologist do more than deliver babies. But then again, I know a little bit about what it will be like. It will be similar to when I had to visit the hematologist/oncologist. You sit in the waiting room and although there are plenty of things to lighten the mood, it is a pretty depressing setting because you are only there if there is/was recently something wrong. I’m not really sure what to do about that.    

One More Round

I’m about to start my fifth and most likely final round of Clomid. One reason is that the FDA does not approve the drug for use more than six months, I understand some people have been on it longer but there are guidelines for a reason. The second is, as I said a few weeks ago, my OB/GYN has done all she can so our next cycle with be with the reproductive endocrinologist.

            To help this time around I went to see an herbalist that had been suggested to me by several people. I’ll admit going in I thought she was going to be anti-medical intervention for fertility and disagree with my path. Pleasantly, she was not. She was able to give me some supplements that help along with the medications I’m on and was actually impressed with level of care I was receiving from my OB/GYN. She agreed with me that we are probably going to need something stronger than Clomid since we haven’t had success yet. She was also able to give me a supplement for stress, which is amazing. So it looks like at the end of the month after seeing the RE we should have a new plan.

            As far as the emotional side of this disease, I’m doing alright. Jeremy and I were able to meet with a well respected friend and think some things through in a different way. At this point, infertility is becoming a way of life for us. We realize that it might be with us for awhile and we can’t put our lives on hold waiting for it to leave. This means that we both need to fully rely on God, and keep Christ at the center of everything. For me personally, this means making a schedule of my week and working towards non-school related goals. I have not done so well the past couple weeks as things have been a little out of the normal but hope I can get on track.

Even though I was not super productive last week, I was able to cross something off my bucket list. My brother and I were able to witness a space shuttle launch in person! We put a lot of time and money into it and it was well worth all of it in the end. Last November we spent a week in Florida waiting for the launch but no-go. This time, it was close. With mere seconds left in the window they were no-go but thankfully it happened. Matthew and I had LTT tickets which are for the causeway at Kennedy Space Center, the closest the public can get and it was amazing. Words cannot even capture the awesomeness of it, and I’m so glad we were able to witness it. You can watch the official NASA footage here. Now I just have to find something to cross off my list in the next year.

Before I end this entry, I want to draw attention to the fact that it is March. This means that it is National Endometriosis Awareness Month, and by national I mean recognized by the federal government. Please take a few moments to education yourself about endo at one of the following places: Endometriosis Research Center, Resolve, or Endometriosis Foundation of America. Nearly 176 million women worldwide suffer from this incurable disease and 30-40% of those also suffer from infertility. Endo deserves to be acknowledged as a disease worthy of attention and research; chances are that someone you care about is battling this disease. My personal battle has been a rough one (you can find more info in my earlier entries) and one that will continue.         

Reality

 It has been a few weeks since my last update, and a lot has change and nothing has changed. At least that is what it feels like. Last time I had posted we had gotten some good news and some bad. We were elated that the medications seemed to be working and I had multiple good follicles and ovulated! But unfortunately we did not get pregnant. We meet a few days later with our midwife, who I just want to say is one of the most amazing, understanding, and compassionate health care professionals I know. She is very sensitive to the burden we are carrying and wants the best for us. I had an idea of what she would have to say to us, but honestly I was not prepared for it. She told us, "We done all we can do for you." I cannot even begin to explain the emotions and thoughts that rushed over me at that moment. Sitting there on the exam table, I just wanted to throw something or curl up in a ball crying. She told us that it was time to see a reproductive endocrinologist, also known as a fertility specialist. In the mean time we would continue the current treatment, until we were able to meet with the RE. The office we were referred to asks that new patients call themselves to set up appointments. I of course called as soon as I could and left a message. I received a return call the next day explain who the doctors in the office were and that standard procedure was to check with insurance to see what if anything will be covered. I was pretty confident that our insurance would cover something since they cover my procedures at the moment.
A few days later I got a call that they had checked with the insurance and that none of the services at their office would be covered, I would be a self-pay patient. The first appointment will cost between $255-335. I was shocked and said I need time to talk it over with my husband and talk to the insurance company myself. I quickly made the called to the insurance and asked whether I had any infertility coverage. Although our exclusions only state artificial insemination and IVF as not being covered, I was told that in fact we do not have coverage for infertility procedures. This upset and confused me, and I asked why my current procedures were covered. She said that they must be diagnostic and I assured her they were not and I had check with them prior to receiving treatment, with codes that indicate fertility treatment. The irony was that our previous plan refused to pay for the diagnostic, even though Ohio state law mandates that they do. I argued with the representative for a few more minutes before I realized it was going to do me no good, all this woman knew was how to punch a code into a computer and tell me if I was covered or not. After I hung up the phone was the first time I really broke completely down on this journey. The reality sunk in that it is possible that I will never be a mom, and money was/is holding me back.
After a lot of discussing, Jeremy and I decided that we would try two more cycle with our current treatments before seeing the RE at the end of March. That would give us enough time to save up money to at least hear what he has to say, and two more hopeful chances that we would not have to see him at all. With that decision made I try to focus on the next round of treatment. I started the Clomid shortly after my appointment and was a bit hopeful because this dosage produced good follicles the last time. On the day of the ultrasound we bought another expensive HcG trigger shot with the expectation that it would be administered directly afterwards. As the ultrasound began, I felt that things were not good because the technician did not say much. She was having obvious difficulty finding any follicles, let alone good ones. Finally she said that the biggest one on the right ovary was only 1.3cm (2 is the magic number), but I was still hopefully that the left ovary would have what we needed. But it was even more difficult to find follicles there, and they measured even smaller than the ones on the right. As she told us the news, and as I was laying there in there in stirrups for what seems like the millionth time, I was numb. The only thing I remember thinking was, big freaking surprise. Afterwards, she showed us to a small room to wait for the doctor’s decision on what to do next. I knew it was not a good sign to be in a private room, even if it was a convince issue. We were probably in there a total of 5 minutes but it seemed like 5 hours, I can’t even remember what we talked about. She finally came back and said the doctor was out and would call us later in the day. I just wanted to know one way or the other. When the call finally came about 4 hours later, it was not what I wanted to hear. They felt that it was not a good idea to go ahead with the trigger, I was grateful that they were honest and angry that we had bought the shot already. After some discussion, they agree that I could try one more round of Clomid before I head to the RE next month but there was no denying that I was and still am depressed.
My future story is being threatened by something way beyond my control and I feel completely and utterly helpless. Infertility has taken over my life. I have cut back on school work to focus on treatments and health; I have to schedule my entire life around medications and appointments. This is not the way this is supposed to happen, we shouldn't have to put this much time, energy, emotion, and money into getting pregnant. It is suppose to be a fun and exciting time with a bright future. Honestly, I am concerned about my mental health at this point. On days I don’t have school I sleep around 13-15 hours just so I don’t have to deal with this, sleep has always been a coping mechanism for me. And because I sleep so much I have troubling falling asleep and usually won’t until after 2 or 3 in the morning. I do not do much, besides read and watch tv. I can literally sit in the same spot all day. The truth hit me in one of my classes when we had to introduce ourselves and say what we doing in our free time. I do nothing. I have things I want to do, say I’ll do, but none of them have happened for awhile now. That is when I decided to reach out of help. I have a few very supportive people in my life that are really helping in this process but I also have some relationships that are struggling because of it, not the least of which is my relationship with God. Being a seminary student I can think of all the things I would say to someone in my situation but that does make it easier right here, right now. So, hopefully as we seek counsel for this part of our lives, my mind and heart will be renewed.
Infertility is so different for anything else I have ever experienced or even heard explained. It does not discriminate, and can turn your life upside down. There are many misconceptions and opinions that it is hard to feel heard or even valued. People are not as supportive of those undergoing fertility treatments as they are other medical treatments, and because of this many of us suffer in silence. The Huffington Post recently ran an article on the silence of infertility, and an article in Self magazine gave an honest view of the emotion side of infertility last year. People are afraid to talk about this, not educated enough to make informed contributions, and often closed minded. The cause is growing but I am not sure I will see large visible support or even insurance coverage while I am living in the world of infertility.
Well, I think I have rambled enough…here is my song for the week: More Like Falling in Love.

Triumphs and Struggles

I haven’t written for awhile because to be honest I was trying to keep my mind off of this whole process, which I was pretty unsuccessful at. I had an ultrasound a couple of weeks ago with great news, I had one mature follicle. We were super excited but that also meant that it was time for the trigger shot. Trust me you don’t even want to know how much one of those cost. What were we to do? It’s not like I can be like “Hey body, can you hang on for a second while I get some money together?” So we bit the bullet and hoped for the best. I got the shot and it wasn’t too bad, I think the price hurt more than anything. Even though I’m taking progesterone supplements they were able to test my progesterone levels a few days later. It is a little funny and comforting when the one nurse calls with results because you can tell by her tone whether it is good news or bad. This time it was good news. The level was above 20 which means I ovulated, maybe for the first time ever. It was a big change from less than 1 last cycle. That is where the good news stopped, it looks like this still isn’t our time. It is discouraging and frustrating and yet again I contemplate our options. We will meet with our midwife on Monday to decide on the next steps in the process for us, which I’m looking forward to.

            In the mean time I have talked with my advisor and we have deicide that it is best to make this semester as easy as possible for me. So, I’ll be taking 3 classes instead of the 5 I took last semester, and one may even be pass/fail. I’ll only have to make the drive twice a week which will be nice. We decide to focus our efforts on keeping me healthy and helping this process in any way we can, but I also struggle with how long we can keep it up. I can’t go to school forever…although that is the running joke in our family.

It would be great if it worked in the next few months but what if doesn’t, many couples struggle with infertility for years.

 I feel like a broken record, but before you think there are lots of ways to build a family and that it will happen when it is suppose to please recall what I’ve say in the past.  Many options are all consuming: financially, physically (at least for me), and emotionally. I know a lot of people have opinions about fertility treatments and how they should be handled, especially in the faith community. Again, we believe God has a plan for all of this and we pray about this daily probably even hourly. We are doing what it best for our family at the moment, so any support is greatly appreciated. I say this because I feel the most alone I have since this journey has started but I try to think of it as the single footprints in the sand rather than being alone. Jeremy and I always say, “We’ll make it through, we always do.” And I know that will be the case with this journey as well.   

Keep Running

Again it has been awhile since I have updated and I apologize. Last week I spent a lot of time wrapping up my work for fall semester and started and finished my third round of Clomid. The effects of the Clomid have been a little worst than usual, but I was expecting that with the increase in dosage. I was also on some pain medication for my endometriosis and the combination made sleeping next to impossible. As frustrating as it was, it gave me more time to work on my papers.  

            Christmas and the New Year were rather uneventful for us. We celebrated Christmas early with both our families and spent New Year’s at home since I was still working on school stuff. It didn’t really feel like the holidays at all this year and there were a lot of things contributing to that. We did not get the number one thing on our Christmas list, if we had became pregnant shortly after my surgery we would have a child by now. As disheartening as that is I can feel a shift in my emotions concerning this process. It is something I think about a lot, I have to in order to keep my schedule of meds and appointments in order; I have become content that this is part of our journey. Don’t misunderstand me, I am not happy about our situation but I know there is a purpose for this far beyond what I can see. I have never blamed anyone for what is happening and that includes God, I really believe God loves me more than I can comprehend and has a plan for all of this. I am thankful that I have been so open about our journey and hope that I can continue to do so, although I am starting to feel some of the hurt that can come with being so open. I appreciate prayers, informed advice, and concern but I also wish people would understand that I have to do what is right for me and my family. I do not feel as if I have lost my faith by turning to medicine. My dad made a great analogy of a man he knew that stopped wearing his glasses. The man believed that God would restore his sight; people certainly shared his faith but also knew God had already restored his sight. God has created wonderful and talented people that are able to prescribe lenses created for each individual to see to their full potential. I believe the same is true with infertility, God has created wonderful and dedicated physicians that can help us conceive. Does that mean that I don’t think that God could cure me overnight? No, I know he could but I don’t think he needs to. I think we need to go through this journey to become the people he created us to be. Does that make it easier to accept? Not always, but I know he has never left us. There is too much evidence that God has been with us every step of the way. I know that God will continue be with us as we keep running this race.   

            This belief has been there through many of my life struggles and this one should be no different. I recently finished reading Plan B: What Do You Do When God Doesn't Show Up the Way You Thought He Would? Although it was nothing new and a little less theological than I am use to (what do you expect I’m a seminary student) it was a great reminder of my foundational beliefs. That God’s plan is always bigger and better than mine, and nothing this world promises will fulfill me.

            Also, this past week my husband shared a very inspirational video with me that I would like to pass along. What IF?