Saturday, May 25, 2013

Anger Management

Taking a few months off of fertility treatments has allowed me time to do some soul searching.  For the past few weeks I have been seeking the treatment of a psychologist.  At first I was hesitant to blog about it, but I feel that it takes a strong person to realize that they need help processing their feelings and managing stress in a healthy way.  Mental health is just as important as physical health and it often gets ignored or is seen as as taboo to talk about.  I think learning to deal the stress and painful life circumstances in a constructive way takes practice.   

Often times during my struggles with infertility, I often feel the need to "convince" people why this is so awful and feel the need to have my feelings validated by others.  I think most would agree that not being able to have children, or anything important that you want, is difficult.  At times I often feel misunderstood, judged, and feel like our struggle gets trivialized.  In therapy, I've learned that ALL my feelings and thoughts are normal and reasonable for anyone in my situation.  I've learned that anger, sadness, jealousy, denial, defensiveness, among other feelings are completely normal.  It's hard not to be defensive about something so personal, especially when many people will never understand what it's like.
Am I angry? Of course I am!  I have every right to be.  Most people would never judge someone who lost the ability to walk or someone who lost their home if they became angry.  Yet at times some people make me feel as if it's not ok to be mad.  Infertility is a loss.  I've lost my dreams and expectations of my entire life I've only ever imaged my life with a family.  My husband and I married each other with the intentions of making a family. So now what?  Now I may have to  say goodbye to those dreams and replace them with something that is only second best...  The worst part it is that I don't have a choice in the matter and there's nothing I can do about it.  I have to grieve the loss of my dreams and life's expectations.   Of course that makes me angry.  It isn't fair.  I know no one will ever understand what it's like unless they've lived it but I think most people can relate to loss.  

Often times it's hard to know what to say to someone struggling with anything difficult in life, whether it be a job loss, cancer, death or infertility.  Sometimes you don't know what to say and wonder if you should say anything at all.  It seems that nothing is the right thing to say.   I can tell you that there have been times when no one could say anything "right" and every comment hurt.  I guess it's just the nature of what I'm dealing with.  My best advice, with this or anything else is to acknowledge it and know that you don't always have to try to help the person "fix" it or offer advice.  Sometimes just hearing someone say that they are thinking about you or just agree that this is a hard thing to handle is enough.  Sometimes all I need is for someone "validate" why I feel how I do and that it's ok to feel this way.  

Saturday, May 4, 2013

Infertility doesn't come with a manual

My intentions of putting this blog out there were manyfold.  It is a way to communicate with loved ones to let them know where we are in our journey.  Being such a difficult thing to deal with, it often times is hard and painful to tell the same story a million times.  It also provides a way for us to share where we are, without people feeling like they are being intrusive.  Never in a million years did we think we'd be in this situation and when we first found out that we would probably never conceive on our own, we felt so alone. The majority of our friends and family had no difficulty and it just didn't seem fair.  Why us?  We were a bit blind sided and didn't really feel we had enough information.  If I had the support system such as an online group, I would have felt so much better.  I am hoping (and think I have) to help others in my situation understand that they are not alone...that their thoughts and feeling about what they are going through are completely normal.  Over time I have come across other blogs and online support systems and have been very grateful they exist for that exact reason.  Last I was hoping to provide education to those open minded enough to listen.  Infertility definitely has a stigma attached to it.  Before any of this happened to us, I myself was guilty of inaccurate information and thought processes about infertility.  From my experience many people do not take it seriously.  While important too other diseases get so much more attention.  Just because this isn't life threatening, doesn't make it life changing.  I suppose I am on a "quest" to help others understand why it is such a big deal so maybe one day others in my situation will not feel so isolated.  It's easy to take for granted that you can have kids....until you can't have them.  For myself, it took a lot of guts to put my life and emotions on display so I hope some good will come of this.  

In the year I have been writing, I've gotten numerous thank you's as well as great words of encouragement.  I continue to appreciate these.  Only a few times have I heard negative comments....maybe because most reading this are going through what I am, or because you can relate to loss and heartache, or because most are open minded enough to consider what I have to say.  Recently it has been brought to my attention that few things I have said are offensive.  My intentions of this blog were never to offend anyone, but to be 100% truthful and raw in my emotions so everyone gets the full effect of what happens to someone in our shoes.  Just like I could never understand what it's like to live with cancer or mourn the loss of my spouse, I don't expect anyone to completely understand.  How could you unless you've lived it?  But that being said, I wanted to give my best effort and that sometimes means what I have to say may not always agree with everyone.  That's ok because I know I would never intentionally offend or hurt anyone.  

So you may be asking what I said?  A few times in my blog I make reference that it is so painful to watch some people take their children for granted when all I want is just a chance to be in their shoes.  I'd give my left arm to have the chance to complain that my kids aren't emptying the dishwasher or are getting on my nerves!  EVERYONE takes things for granted, myself included.  For years I've taken for granted that my reproductive system actually worked!  There are days I complain about my job or even Chris but I am still grateful to have them.  I'm also guilty of taking for granted that I lived a pretty good life up until this infertility issue.....I've been to some great places, have a nice home and some pretty awesome friends and family.  But if infertility has taught me one thing, it's to be thankful for EVERYTHING you DO have.  While no one can be thankful for everything 100% of the time, I've been trying my hardest to practice being thankful as often as I for all who have supported us through this journey now is the time I am publicly saying THANK YOU!  While not being able to have the family we desire really sucks, I still have many things others don't.  Despite that our life just feels incomplete.  I think the desire to have your own children for most people is innate and difficult to suppress....I've surely tried.

So when I say that people take their kids for granted at times, I in no may mean to be disrespectful or judgmental.  I'm sure all parents at one point in time has been guilty of this but never did I imply that makes someone "bad" parents or ungrateful for what you have.  While the line is thin, to me there is a difference between being ungrateful for having kids versus taking them for granted at times.  I can guarantee if and when I can have my own children, I will be just as guilty at times.  It's simply human.  I'm sure I'll be wanting to lend my kids out when they act out in the grocery store or to send them to Nana's house when I need a break from all the screaming and yelling kids seem to do.  But I welcome those days with open arms because it means I can be a parent.  My words of people taking their kids for granted are out of pain and jealousy that I can't have the same chance.  As a result some think I "hate" people with kids.  I can say that's absolutely not true.  I can say that it's damn difficult to be around those that do simply because it hurts.  It's nothing I can help, but I am working on feeling more comfortable.  Feeling this way around those that I love the most makes me feel guilty...but I know it's human nature to feel jealous.  

As an analogy:  You're with a friend at the mall who just recovered from a double mastectomy due to breast cancer.  You walk  past a Victoria's Secret store and your friend hears another woman complaining that her boobs are too big to fit into the bra.  If you're friend said to that woman, "just be glad you still have breasts", would you think this comment is out of line?  Probably not.  Then why can't I say "just be glad you have kids" when folks complain about theirs?  Infertility can have such double standard at times.

It also means that people take for granted that they can have kids...that their "parts" aren't broken....that their body does what mother nature intended.  I would suspect that most of you reading this NEVER thought about what you would do and how you would feel if you couldn't have children.  I know I never did.  

The other thing that has been brought to my attention is that no one can say anything to me without offending me.  Sadly at times this may be true!  This is such a crappy thing to struggle through and often times there ISN'T the right thing to say.  That was the exact point I wanted to make....this doesn't come with a manual on how to feel or how to communicate.  I of all  people can appreciate that there sometimes isn't anything "right" or "good" to say.  I want to set the record straight that unless it's outwardly judgmental or disrespectful,  I do appreciate the intent.  Sometimes saying nothing can be equally as painful as hearing the dreaded "just relax" or "it will happen when it happens".  Unless you've lived a day in my shoes I don't expect anyone to "get" why these comments are painful, but just to be a little more mindful what they say..for my sake and for any other people living with infertility you may encounter.  It's hard to explain, but hearing these things only invalidates and trivializes how I feel.  No one would tell a cancer patient to "just relax" or "it'll be OK",  because you know it may very well not be.  I'm not asking for advice or for someone to "fix" us...just someone who listens and acts as a companion.  Sometimes the best thing to say is "You're right...this does suck" or "I'm with you in this journey".  I hope that helps anyone struggling with what to say or what not to say as well as to help clear up any misconceptions about what I meant.    

Thursday, May 2, 2013

Third Opinion

First, let me start my expressing my gratitude towards those you are donating and/or who are supporting our decision to go through another IVF cycle.  Without your help, this would be even more of a difficult struggle.  Those who provide words of encouragement for us...this gift is priceless.  

I wanted to provide an update on where we are.  Since our post IVF meeting with Abington, we have had 2 other opinions.  Just to recap what the doctors at Abington said: Basically the IVF was picture perfect until our embryos started to grow.  There is a strong possibility that they aren't growing because they are genetically abnormal, which is caused from abnormal egg or sperm DNA.  Sadly, not much can be done to correct the DNA in our eggs and/or sperm.  The difficult part is that we do not know if it's the egg or sperm and even if we did, there's no "cure" for it.  For our next cycle, Abington will try using something called PICSI and something called co-culture.  PICSI is a procedure to pick out the healthiest sperm.  Usually it's just done visually under a microscope by an embryologist.  With PICSI, the sperm are placed on a special slide with hyaluronan.  The best sperm are supposed to bind to it and have a better chance of being genetically normal.  Co-culture involves growing my endometrium (uterine lining) in a petri dish.  The embryos will grow on top of this to provide a more "natural" environment to grow.  

A few weeks ago we had a second opinion with RMA.  We were basically told the same thing.  She recommended possibly changing my medication, as this MAY produce healthier eggs.  Other than that, there isn't much that can be changed.  

Today I had a third opinion with SIRM.  I wanted to use this doctor as a "tie breaker".  He agreed that our problem is poor embryo quality.  Again, no one knows if it's the egg or sperm but ultimately it doesn't matter.  He mentioned doing PGD (genetic testing) testing on the embryos.  It involves taking one cell from the embryo (it doesn't harm them) to see if they truly are genetically normal.  This will provide us with confirmation as to WHY they aren't growing, but again will not help us to determine if it's the egg or sperm.  It ultimately won't change the outcome of whether or not we become just provides confirmation why it's not happening.  If we ever decide to throw in the towel with having children, it will just be a way to provide us with closure that this was in fact our problem.  The issue is that it costs an additional $3,000 to $5,000 on top of the IVF fees.  That's expensive for a piece of mind, by maybe worth it.  If the embryos do turn out to be genetically normal, then something else in going on and we have to decide if and how we can fix it.  

Most reproductive endocrinologists do not believe in immunological testing because research doesn't back it up.  However the doctor at our last opinion is big on it and believes it could be a factor.  Basically my body may be "attacking" the embryos so they never implant and cause pregnancy. I'm not sure how I feel about it yet.  The test is about $500, so it may be something to consider...again for a piece of mind.  

The last doctor looked over my chart from Abington and found something wrong with me....all along we thought our only problem was with the sperm.  My AMH (anti-mullerian hormone) is slightly low.  Having low AMH could mean that I may have lower quality eggs and lower ovarian reserve (less eggs left).  My AMH is relatively borderline for my means I'm getting older and my "biological clock" is ticking faster than we all thought. I'm like a ticking time bomb, so waiting for another IVF cycle isn't the best...the sooner the better.  While my levels aren't horrible, it's still not the news you want to hear...especially with a birthday coming up so soon.  Statically after 35, the chances of pregnancy start to decrease dramatically.  Awesome! Time is of the essence.

All the doctor's threw around the idea of using a donor sperm since this is most likely the culprit in our infertility.  They don't necessarily think it should be for this IVF cycle, but something to strongly consider if we choose to try a third.  It's something that's hard to consider since we would prefer our own biological child...but being parents of ANY child will be a blessing.  

Chris and I have been doing some more talking about when and if we are going to call it quits.  Let's just say we plan on doing another cycle (this summer), but need to do alot of thinking about any more.  While it's ALL we want, it's incredibly expensive when you don't have the funds and are on a time limit and it's also emotionally draining.  As sad as it is to give up, we are ready to begin LIVING and enjoying life...even if it is our "second  best" life.  It's an incredibly difficult thing to think about.  While we haven't given up yet, everyone has their breaking point.