Remembering

I have been thinking a lot lately about our journey and while I certainly have tried to block a lot of it out, I don't want to be one of those people that becomes insensitive to others still ttc. I tell almost everyone I meet about our struggle to conceive our little boy. When I say "almost 7 years" it doesn't really begin to cover the emotional trauma experienced in that time. To others it just sounds like a pretty long time. I don't ever really want to forget my struggles because they are a part of who I have become. I am absolutely not the same person I was before infertility.

Anyway, in thinking about our journey I found one of my old journals. It is so heartbreaking to read and the posts are so reminiscent of a rollercoaster. I am so sorry for anyone who is reading this who is still on the journey. It is such a difficult one that nobody seems to be able to appreciate. Be kind to yourself. On many days I know it feels like a life or death struggle. I will never look back and say that struggle wasn't so bad. It WAS that bad and probably even worse. Don't let anyone ever make you think otherwise.

I was reading through my journal and a particular entry struck me. I wanted to find out if anyone going through IVF can relate, so I thought I would post an excerpt from it. Here it is:

"Friday, October 30, 2009
...So, I just stuffed my face with popcorn and I can't eat or drink anything after midnight in preparation for the egg retrieval tomorrow. Here is a sample of obsessive thoughts that come with this step in IVF:

1. Did I already ovulate?
2. Did some of my follicles stop growing?
3. Did all of my follicles stop growing?
4. Are they going to run behind and miss the window of time to retrieve?
5. Are they going to drop them?
6. Is something going to keep them from doing the retrieval?
7. Will we get into an accident on our way to the clinic?
8. Will hubby make it to Vega$ to give a sample?
9. Will we oversleep?
10. Will Dr. Sher get food poisoning?
11. Will HE get into an accident?
12. Will the anaesthesiologist oversleep?
13. Will our condo burn down?
14. Will the power go out all over Las Vegas?
ETC. ETC. ETC. ETC...

It's like this every step of the way. After retrieval, the list starts again for fertilization:

1. Will the sperm be gone?
2. Will someone drop the sample?
3. Will any of them fertilize?
4. Will none of them fertilize?
5. Will something get screwed up?
ETC. ETC. ETC. ETC...

If anything fertilizes, the next list will start...

1. Will it be the right DNA (the one that doesn't match mine)?
2. Will they grow?
3. Will they be fragmented?
4. Will they be good quality?
5. Will they make it to 5 days?
6. Will they become blastocysts?
7. Will they be able to put them back in me?
8. Will there be any to freeze? (right.)
ETC. ETC. ETC. ETC.

You get the idea... This all started prior to stims with:

1. Will I even make a follicle?
2. Will I overstimulate?
3. Will I understimulate?
4. Will the cycle get canceled?

It's no wonder I lost 5lbs. I think the anxiety nearly killed me! I have been fairly relaxed since doing the trigger shot. I realize that at this point, I have no control over any of what will happen (except waking up and getting to the clinic on time). It is so hard to let it go when you have put this much time, effort and $$ into it. It's like signing up to go to college (for 5 years) and paying everything out-of-pocket, working your ass off, all with the understanding that when you get to the end only 30% of your class will get a diploma while 70% will leave with NOTHING and NO MONEY BACK. Who would sign up for THAT??"

Does that about sum up IVF for anyone else? Would love comments on this one (or really ANY one!!)...

Parenting after infertility

Now, I am certainly no expert on parenting after fertility, but I am learning a little about parenting after infertility and I swear there has to be a difference. I am a bit neurotic as it is (it seems that all the infertiles I know are type A people to begin with), but I feel an added pressure not to screw my child up. I am already concerned about him inheriting my MTHFR gene and now I read that a dq alpha 4.1, 4.1 baby has a higher risk of having later autoimmune issues. I have only given him one vaccination (DTaP) and plan to wait until age 2 to do any more after reading more about MTHFR and vaccines. He had diarrhea for 10 days after that first shot at age 2.5 months.

Unfortunately, one of the biggest disadvantages to parenting after infertility is that the minute you complain about ANYTHING that new parents complain about, you are immediately told, "Remember, you asked for this, this is what you wanted so badly," which implies that you are not allowed to even struggle with being a new parent. To me, this is completely unjust. After everything infertiles go through to have a baby we are probably able to appreciate our good fortune more than someone who did not struggle, but how is it that we are expected not to struggle with the challenges of new parenthood? New parenthood for us may even be more challenging in some ways because of what infertility has done to us. My own father made the "this is what you asked for" comment the other day and I was very upset by this. Anyone who has not had more than four hours of uninterrupted sleep per night for 6 months straight is probably going to be frustrated regardless of how long they tried to have that baby. Sheesh.

I guess the good thing about parenting after infertility is the extra patience and love I feel that I have for my child, particularly when I am woken up every night at 1 & 4 to feed him. I look at him in amazement every.single.minute.of.every.single.day. I don't mean that fertile parents don't love their children. I think it is possible, though, that they may not have the same level of appreciation for how amazing a new baby truly is. I don't think I would have been quite as patient if my little boy had just landed in my lap without such unfathomable effort.

Just really sayin' that parenting is not easy just because it is something I waited so long for. I am not upset that it is not easy. I didn't expect it to be, really. I just don't think it is fair that I have to be afraid of getting rude comments if I even so much as mention that I am tired...

The gift that keeps on taking...

I only call infertility a gift in the sense that I feel I have been given the gift of becoming a stronger person for having gone through it. Unfortunately it keeps on taking from me in so many ways that I did not anticipate.

1. I have not "gotten over it" now that I am a mom. I still 'feel' infertile. It has taken who I was.

2. It has taken my ability to identify with others. I still relate more to my infertile friends than my friends with kids, but I don't really fit on with either group. Parenting after infertility MUST be different than parenting when you know you can pop out another kid at any time, even "accidentally." My coworker strongly disagreed, but I tried to explain that I live daily with an, at times, overwhelming feeling that something will happen to my precious child and while I know he is irreplaceable, I also am well aware that I can't just get pregnant again and have another child to love. It took 6 years last time and since I will be turning 40, I don't HAVE 6 years:(

I cannot 100% fit in with my infertile friends because I was one of the lucky people who ended up pregnant naturally in the end. I know what they are feeling because I spent many years thinking I would never have a child, but in the end I have my child so I will never know truly how it would feel to never have the one thing I so desperately wanted. I am so sorry for anyone who is at that point in this journey. I know that after 6 years, I was beyond exhausted. I was just surviving minute to minute some days and feeling so alone.

3. It has taken from my ability to feel happiness for others. Frustratingly, I still have a hard time being as happy as I would like to be for friends who are now pregnant after only going through infertility for 2 or 3 years. I will always be very bitter about the fact that most people really can't imagine what it feels like to struggle with infertility for SIX YEARS (that is 72 MONTHS of despair). My misery was only just beginning to settle in after 2 years. That is when the first of four miscarriages and at least 9 fertility treatments STARTED. Their ending after 2 or 3 years was just the beginning for me. This is not to say that they did not struggle, I just feel that they may not have reached the same depth of despair. I realize that this feeling seems unfair, but it is just how I feel and I can't help that. Logically, I know that infertility experienced on any level is a life crisis and if I were to go back to how I was feeling after only two years, I would have told you that it was the worst experience of my life. I just didn't realize at the time how bad it could get. It is only in hindsight that I can say that two years really isn't so bad in the grand scheme. There are certainly people who have suffered more than I have who would say that 6 years is nothing, try 10 years etc. I don't want to minimize anyone's struggle with infertility no matter how long he or she has struggled. We are all together in this. I just can't help but feel bitter that I struggled for sooo long. It is more about me than about anyone else. This is still something that I am trying to work through... I HATE still feeling bitter. I hope I have not offended anyone with this part of the post, the purpose of my blog is to be brutally honest with my feelings, no matter how horrible they may seem. I have a hunch there are other people who feel the same.

4. It has taken away my hope for a second child and replaced it with the fear of ever having to experience loss again. I am terrified to go through that ever again. I make it a point to appreciate what I have for I am fortunate, but I still have a hole in my heart for the 4 siblings my son has that he will never meet and a fear that I am still "broken" and will never get to experience pregnancy again. As stressful as it was, I loved being pregnant and the time my son and I shared together back when I did not have to share him with anyone else in the world. (For those reading this who have not yet gotten pregnant, I am sure the thought, "Are you kidding me? At least you got to BE pregnant. I may never experience that!" is crossing your mind. I completely understand. I know I would have had the same thought a few years back. It is okay and perfectly normal.).

So, those are some of the big things that infertility has taken from me. I try to appreciate the perspective it has given me on life. Oddly, I would not trade my experience (and I said this long before I had my son) because it has made me who I am today and it is a part of me. I just don't know if people realize that infertility isn't something that ends when you have a child. It truly is the gift that keeps on taking...

PUI

PUI. Posting under the influence. Not a good idea. I realized this after I went back and read my last entry... Not super cohesive. Hope it made sense to someone out there!

I am not on Facebook. Never been a fan. I never joined because I did not have the energy to try to make my life look perfect. The only places I could have checked in at were fertility clinics and pharmacies anyway. It is probably a good thing the internet barely existed when I was in college. Thre was no MySpace or Faceook. Those could have been some REALLY messy posts under the influence. I'm not gonna lie, I am a tiny bit under the influence right now. I had a very rough day at work and it was the only coping strategy that fit into my schedule. To say that I am beyond exhausted would be a gross understatement. I am not sure how much longer I will post here since I don't think anyone is really reading this. I would at least like to be able to post the birth story at some point and I think I am just about there. I want to do that when I am not PUI though... Not sure when that will be!!

The irony of it

So, today was yet another reminder that I will always be an "infertile." I had an appointment with my naturopathic doctor today to talk to her about my joint pain. I have had joint pain in my fingers, toes and knees since March. My knees actually feel better, but my fingers are a MESS. Particularly my right thumb. I am shocked every day by the number of things you do with your thumb that you can take for granted!! Anyway, my doctor referred me for some bloodwork and an xray. So I am sitting in a chair at the imaging place with my hand on a black base under the xray machine and the technician leaves the room to take the picture (or so I thought). She then comes back and carefully asks if I have had a hysterectomy. I tell her no, that I had a baby. Then she asks me if there is any possibility that I could be pregnant and I have a quick chuckle. Seriously?? Anyone else would not have thought much of it, but I wanted to say, "Lady, you have no idea- it took us SEVEN YEARS to have a baby, please go ahead with the xray since I have driven all the way here in the 113 degree heat. There is no way I could be pregnant." But, to my dismay, I was told that I would need proof (a blood test) before they would do the xray. Now, I totally understand the theory behind this, but really??! What infertile person enjoys having a pregnancy test done, much less one that they know for a fact will come back as a BFN!? I had a momentary panic attack at the thought after having soooo many BFNs, but my thumb hurts enough that I will just do it and get it over with.

I think if I were still in the thick of infertility, I would have fallen completely apart right then and there. Every day I read blogs of those who are still in the thick of it all and many times tears will start to sting my eyes. I came across a blog today that may as well have been written by me. The girl writing it described the experience of infertility soooooo well. I had all of the same thoughts as her at various points along my journey, but could never have articulated each of those thoughts as well as she did. I don't know which blog it was because the internet connection on my phone stopped working and I lost it. I will be searching it out, though.

I had always thought (hoped) that once I became pregnant or had a child that infertility would magically disappear and I would never get on that ride again. Well, I was mistaken. While I have been fortunate to get off the rollercoaster, I will always live in the park. I would call it an amusement park, but I am not sure that "amusement" is really the right word. Either way, I will forever spend my days walking around the park observing the reactions of those in line for the ride, hearing the screams of those still on it and waiting for others to get off. I don't want to leave my sisters in the park alone, but I don't think I will ever really "fit in" outside of the park. And that is okay. I think that we need to support each other at whatever stage we are in. I know that watching someone else get off the ride is a time of mixed emotion. Part of you is insanely jealous because that person has gotten what you wanted so badly and may or may not seem to have worked as hard as you did, but part of you is happy that one of your infertile sisters reached her goal. It is a tricky place to be emotionally. It is exhausting and schizophrenic. I know that some people who have read this blog (I see that 186 people actually have even though I am not really cool enough to have followers!) may not want to read any further because it is not always exciting to hear about the happy ending and I totally understand. Maybe my earliest posts will be helpful, though.

If you read back in my blog to the point where I was feeling more "comfortable" on the ride (Feb/Mar/April 2010), you can see that I had hope that things would be ok whether or not I had a baby. I NEVER would have thought that was possible if I had not experienced it myself. I was feeling stronger and thought that I would be ok no matter what happened. (Not that I would not always have had a hole in my heart for the child/children I never had). I had no idea what the future would hold at the point.

Not a day goes by that I don't think about my infertility and acknowledge how fortunate I am to be walking around the park and not on the ride. I wish I had known that all of the feelings I was having on the ride, no matter how bitter they seemed, were normal and okay. Really, nobody should tell ANYONE else how to feel. You feel how you feel and that is okay. I am thinking of all of you out there who are still on the ride and I am hoping that some of what I have been through could help even one of you. Please read my post about saving $15,000 from earlier this month as it gives a few last ditch ideas if you have already tried everything. Words cannot express the sadness I feel when I read of another failed ivf or disheartening diagnosis. I want to give people hope, especially since I was always told I had bad eggs and would never have a baby without medical intervention. I don't consider my child a bad egg. Eventually I will post a birth story, but I am still not quite ready yet. The after-effects of infertility suck (certainly not as bad as infertility sucks). I don't want to complain, but I also don't want anyone to think they get to leave the park...

Looking back...

I find myself looking back on the past seven years lately and having a hard time believing that I actually went through all that I did. If someone told me I would have to endure that all over again, I honestly don't think I could bear it. I went back to my old job last week and was amazed at my ability to focus on my work without being distracted with thoughts of infertility for more than 7 seconds at a time. I couldn't believe how productive I was even though I get far less sleep nowadays. I knew that infertility had taken its toll, but I keep seeing new ways in which it did that.

I am so sad for the time lost. I apologize to anyone and everyone who met me during that time. I must have come off as such a bitter, angry person. I actually WAS a bitter, angry person, but just under the surface was a sadness that ran so deep it threatened my very existence. There is still sadness that comes with losing my babies, but it doesn't run with the level of anxiety that it used to. There is still some anxiety (well, more than 'some' anxiety) that comes with the thought of getting back onto a rollercoaster ride that I spent years trying to get off, but I am not ready to stand in line for a ticket for that ride quite yet. I want to bask in the stillness for just a bit longer.

I frequently find myself waking just before I fall asleep to thoughts of the other shoe dropping and squashing the life right out of me. Before getting off the rollercoaster, but toward the end of my journey, I felt a sense of being able to survive anything. Now that I am on "the other side" I feel a strange sense of guilt for being so lucky even though I endured more than many. My heart aches for those who have endured so much more. I sometimes feel like I didnt really "survive" infertility per se, I just had the good fortune of getting off the rollercoaster. I sometimes feel that it is those who did not get the original happy ending who are the true survivors. Having to carve out a new life different from the one they planned. Sometimes I feel like the little kid who whined soooo much that she finally got her way. Deep down I know that I earned my happy ending, but what about those who have worked harder, but didn't get what they wanted?

It makes me sad that infertility is such a mind fuck.

Now I am just rambling. I just wanted to get those thoughts out before I lay me down to sleep...

My two cents may save you $15,000...

So, I am not quite ready to post a full update, but as I was pondering when I might be able to post I realized that I didn't need to necessarily post an update. I really just want to throw some information out there that someone may need right now to save them from even just one BFN.

If you are reading this post because you saw that your medical profile is similar to mine (borderline high FSH, fibroids, advanced maternal age, recurrent pregnancy loss, thyroid issues, activated NK cells, DQ Alpha match (4.1-one of the toughest matches to have), homozygous MTHFR- A1298C, failed IVF cycles, horrible egg quality, mild endometriosis, possible adenomyosis, yadda, yadda, yadda), I want you to promise me you will try two things before you give up or move on. These are two things that I feel are the reasons I was able to get pregnant and stay pregnant:

1. I stopped eating gluten and dairy, though I did not test positive for Celiac Disease. I think that I may just be intolerant. I have always had issues with dairy, but spent many years in denial (I mean, really, a Wisconsin girl cannont live without cheese, right?). I think that gluten and dairy were both causing inflammation in my system which in turn affected my hormone levels, which in turn may have affected my egg quality. Now, I am not a doctor so I don't know anything for sure. All I know is that things were different after I stopped eating gluten and dairy.

2. I had food allergy testing done. I had other food sensitivities that I also feel were causing inflammation (beans, pork, beef, GARLIC!!! etc.). I also avoided these foods.

After eliminating these foods from my diet, I felt less bloated, less crabby and just better in general. Within four months of doing this, I had gotten pregnant twice. I STRONGLY believe that food sensitivities may be one of the causes of many diseases including infertility and I believe that most REs do not want people to know this because it would impact their earnings. I am not saying that this is the answer for everyone, but I do think there are people who have similar profiles to my own who certainly could benefit from such simple (and almost free)changes.

I do also want to throw a shout out to my friends, Lovenox, Prednisone and Intralipids. I believe that while I was not using these items at the time of conception, I did begin using them within days of my first positive hpt and I feel that they played a role in allowing the pregnancy to continue.

Lastly, PLEASE do not hesitate to disagree with your doctor or be persistent about being prescribed prednisone, lovenox, progesterone, intralipids or whatever it is that you may need. While my regular ob/gyn made me swear I would not get pregnant again for at least 18 months because I kept him on his toes, I do not regret my sometimes feisty attitude toward getting whatever it is that I felt I needed to sustain a pregnancy. (For the record, I would NOT have wanted to have me as a patient either...).

Anyway, I know that every case is very different in the land of infertility, but if anyone with similar issues can benefit from what I have learned the hard way it will make my journey more meaningful. I would not wish 6+ years of infertility on my worst enemy.

I hope my two cents can save someone the $15,000 an IVF cycle might cost...

More later!
P.S. Check out Dr. Sher's blog at ivfauthority.com. He knows a lot about immunologic implantation issues!