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.

---

[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.