The Next Step – War Related Infertility vs. Us

We started a support group on Facebook for families who are going through similar situations.  It is called Families Impacted by War Related Infertility.  We started the page that way we could all share what we know and experience to make it a little easier on others! This page is just for families in this situation, so they can feel safe to share their stories.

Recently, the VA called and wanted to set up a consult to discuss infertility.  We got the call the same day Kevin met with a Congressman, strange.  We have no idea what it is really about.  The law states that the VA does not pay for IVF, so we are not too optimistic with the VA covering it.  It may just be they want to look at his hormone levels. We already know they are very low, not sure how he has functioned this long like this but who knows… We will of course, update people once we know more about the VA’s appointment.

Tomorrow we have a consult with Shady Grove.  They are supposed to be one of the best in the country.   I cannot wait to hear what they have to say.  It feels strange to be excited about having an appointment with an RE doctor.  But, it means we are going somewhere, we have options, we have hope, we have a chance.  That is pretty exciting!  At the same time I am nervous, hormone levels are not where they need to be.  His levels were drastically low the last time we went to the doctor.  The doctor felt that he should have already been feeling bad, but he wasn’t.  Now, several months later, we are facing it or so it seems.  The medicine they give men for hormones kills off sperm.  Typically it will come back after the medicine is stopped, but what if it doesn’t?   Then what? I am terrified that our clock is ticking to have our own children.

I research this topic constantly; it is almost like my second job at this point.  It is so important to me, having a family with Kevin means everything.  I feel like the more educated I am about this process, the higher our chances will be to finding the right path for us.  As a society, we are quiet and secretive about these issues.  I do not have a problem talking about these personal issues to the world; I can be someone else’s voice if they need me to.  These men and women fighting for our country; they should never wonder how they will be able to achieve their dreams of having a family.  We are still being told that since Kevin is retired, IVF treatments will not be covered no matter the reason.  I’ve found opportunities to discuss this issue with others in similar situations; I think together we can get this changed.

I just cannot wait to have answers to all the thousands of questions in my head!  I’m glad that we started this journey before we got married because we will have a solid plan by August when we are ready to start our family.  We are SO ready for this (so are our families!).

If you know anyone in the same or similar situation, please have them like the Facebook page!  Getting the word out will definitely help! It also just helps to have support.  I haven’t started fertility treatments, I haven’t had my heart-broken after treatment, I do not know what it is like yet, nor will I pretend to.  I do know what it is like to sit in a waiting room, feeling like I am literally going to die while waiting for test results, I do know what it is like to be terrified that you will not get our family easily, I do know what it is like to worry and cry over your future family and wonder if it will in fact exist one day.  That is what I know so far in this journey.  One day soon, I will know more and I know the support would help me.  Sometimes, just having someone in the same situation to talk to is all a person needs. I hate for anyone to ever feel alone!  Some people have already mentioned on the support page that they had no idea other people were going through similar things.  It shouldn’t be that way; no one should ever have to feel alone, especially because they are not.  This is a very personal and private issue for many, for me, it is the opportunity to bring people together and support others in similar situations.

With every turbulent storm, comes peace.

With every turbulent storm, comes peace.

He won! Finding strength in unimaginable places

Do you ever just look at a person and wonder, how do they feel?  How does what I just said affect them? How does an event affect them? Is it the same way I feel or am affected? Sometimes I feel so involved in my own emotions, it is almost overwhelming to comprehend what someone else might be feeling.  I often look at my fiancée and I  wonder, how does he feel?  He had a bomb go off right on him… how does that make him feel?  Kevin was blown up.  He was walking and then all of a sudden he wasn’t.  After the IED went off, he looked at himself and saw flesh, blood, and bones sticking out everywhere.  He knew his leg had been blown off.  HOW DOES SOMEONE DEAL WITH THAT?  It baffles me honestly.  How did he decide to keep moving forward after all of this?

After the IED was blown and medic was ready to move him, he was carried by his fellow soldiers to the helicopter to be lifted out.  While in the helicopter they made him keep talking… we know why they wanted him to keep talking and I’m sure he knew why too.  Think about that… laying in a helicopter and having people working on you and making you talk to them so you stay alive.  Can you imagine this?  I can’t.  I can replay what I have seen in movies or on TV.  Those are just actors, they play the part well but they do not know what it is really like.  It makes my mind go crazy thinking that what I’ve seen in movies or the news happened to someone I love. I cannot put myself in his shoes, I cannot understand what it was like for him.   All I know is that somehow he found strength in the deepest and darkest places.

He never quit.  He fought through it all.  He had external fixators putting several pins in one side of his leg and out the other, twice!  It was disgusting looking, but he dealt with it.  Somehow he walked on it.  It was just another bump in the road for him. At one point, his hand was literally sewn on this hip to give it a better blood flow and keep it alive.  Just another bump.  He had around 30 surgeries, and yet again every surgery was just another bump in the road.  He never lost hope, he never gave in;  he knew there was more out there for him and he went for it.

I am so proud of this man.  I’m proud that I get to be his wife. What an honor to spend the rest of your life with someone so loving, inspiring, dedicated, and hard-working.  It bothers me sometimes to think of the things he experienced . We talk about what he says it was like for him and I was there for some of the recovery.  I still don’t know what it was really like though.  All I know is… he won.  He beat the odds and he won.   I am so incredibly proud of him for it!

An x-ray of the external fixator.

An x-ray of the external fixator.

The external fixator... or as we call it - the cage of hell.

The external fixator… or as we call it – the cage of hell.

Cheese arm haha!

Cheese arm haha!

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The beginning of our journey with war related infertility

Kevin & I have made a decision to be open about our struggles.  We believe that only with that openness, can change occur.  Most people know about the injuries that Kevin endured in Afghanistan… an amputated leg below the knee, missing pinky, mangled wrist, and a mangled left leg.  He is lucky to be alive.  Those injuries resulted in 2.5 years of recovery at Walter Reed.  However, there is one injury that has not been talked about much.  This injury could cost us the ability to have a family.  If it wasn’t for advancements in science, that would be definite.  One of his testicles was severally damaged in the blast; it resulted in it having to be removed.  He was on testosterone replacement for years because of it.  Recently, he has undergone tests to find out fertility levels.  The results are not pretty and borderline heartbreaking. Anything under 10 million sperm is considered low.  We are talking about a couple of 100 sperm in our situation.  The reason this happened…war.

The armor that soldiers wear has a protective Kevlar diaper(sounds funny I know, but it works) for protection.  However, the Kevlar diaper does protect them if the blast shoots straight up into their groin.  However in Kevin’s case and how he was striding, as the IED exploded, the blast crept up his leg into enough of an opening to damage groin area.  Had he not been wearing this diaper, the damage would have been even more devastating. The IED’s are set to mangle you; they want you to survive but suffer.  It is sick and it is twisted, but it is the reality.  I am thankful for the thousands of soldiers that show their strength when it was meant to be taken away from them.

Thousands of soldiers have experienced this type of injury, leading to infertility.  Many young military families who were planning to have children are now wondering how their life long dream can come true.  This is not just happening to one or two couples a year, it is several hundred a year, which is adding up to thousands during this war. Some soldiers going to war are only 18 years old, they haven’t even thought of a family yet. The idea of a family is robbed from them before it is even a reality for them.  It is a real problem.  If I knew someone going for deployment now, I would highly recommend freezing some sperm.  The ability to have a family is valued significantly.  When that is taken away from you, it is devastating.  It is worth the precaution in my opinion.

Kevin and I want to start our family soon after getting married.  We’ve already started the process of determining how this is going to be possible for us.  We’ve been told by Walter Reed that we will require IVF in order to conceive a child.  In the middle of April, we have a consultation with Shady Grove Fertility.

The best part… Tricare and the VA Specifically EXCLUDE all fertility treatments.  The cost of the treatments (which runs from $7,000 to $20,000) is completely on the solider and the family. It does not matter to the VA why the infertility is present.  It is simply not covered.  For the soldiers who are only suffering infertility as a result of their war injuries, thousands of dollars will be needed to hopefully make it happen.  To make their dream of having a family a reality will completely depend on their financial situation.  All families should be financially comfortable before having children.  But in this case, being financially ready is not similar to a family who conceives naturally.  It is forking out thousands of dollars before the child is even conceived!   I’ve heard people say… why not adopt?  My response to those people would be, have you considered the cost of adoption?  Also, the want and need to carry your own child can be unbearable.  It does not simply go away.  Plus when so much else has been taken from you, this is just another blow.  Every family deserves to have a family the way they choose.  It saddens and stresses me that Kevin & I will be faced with significant financial obligations in order to have our family.  However, we both agree, it will be worth it.

I will be sharing our story with fertility while we experience it.  We are sharing this to make people aware that this is a real problem.  Our government refuses to recognize it.  Men and woman who fight for us should not face significant financial obligations to have their families, if a war injury caused their infertility. We will be meeting with government officials to get their support with changing the laws that make it this way.  We will be asking for support in the future with issue and we hope you can add your voice!  Our hope is that by sharing such personal stories, we can make a difference for other people facing the same problems.  Our injured soldiers deserve the same opportunity to have the family that they could have had before their injuries.  We know the change will not come soon enough for us; but hopefully, we can help initiate change for others.

baby feet

HFOT – Thankful for amazing people!

Kevin, my fiancée, was injured during his first deployment to Afghanistan.  An IED caused significant damage to his body.  Kevin lost is right leg below the knee, his pinky, and suffered significant damage to his wrist and left leg.  His left leg is covered in skin grafts and shark intergra (that’s right he is part shark now!).  Last year, Kevin had his left ankle fused as a final attempt to save the left leg from amputation.  Kevin, along with the use of an IDEO brace, is able to enjoy life without the significant pain that his ankle as caused him in the past.  Although it still causes problems from time to time, we remain hopeful that the ankle fusion will continue to hold for him!

Kevin retired from military and now lives at home with me.  We live in a home that is not accessible for him.  It is a two level home with a basement.  The bedrooms are upstairs, laundry and storage are in the basement, and the kitchen is on the main floor along with living space.  Our bathroom is not accessible for him at all.  He has to use a portable chair for showering which is really not all that safe day after day.  Living in this home has been emotionally and physically stressful for Kevin.  He always strives to be independent but it is not always possible in our current situation.  He is not able to take a break from the prosthetic at all because the wheelchair cannot fit in our house.  This causes him issues with skin break down on his residual limb.

We recently received some amazing news!!!!!  Homes for Our Troops (www.hfotusa.org) will be building us a home that is completely adapted for Kevin!!Kevin will now have the opportunity to live independently!  We are so excited for such an amazing opportunity.

Homes for Our Troops has treated us like family from the very beginning of this journey.  We are so blessed to have these wonderful people in our lives!  Kevin and I have received so much love and support for this organization.  We are very thankful for this amazing opportunity that they have opened for us!  This opportunity will be a life changer!

We also want to thank everyone who donates, volunteers and shares supportive words with us!  We appreciate it so much and it makes a world of difference! Our new home will be finished in about a year or so!  We are so excited for this new journey!

Along with this post, I attached our video interview with Homes for Our Troops!   I hope you enjoy!

“I’m so OCD”… no seriously

The definition of OCD (Obsessive Compulsive Disorder) is the presence of unwanted thoughts leading to excessive compulsions and it is pure hell!  I was diagnosed when I was 10 years with Anxiety/OCD.  I never understood why until probably just this year. I knew I was easily upset and that things would make me nervous and angry, but did not really realize that it was not typical.  That is 17 years of not understanding why my brain was torturing me.  I always thought having OCD meant you had to have everything neat and tidy.  I knew that wasn’t me because most of the time I feel like everything is a disaster. Growing up I never kept my room cleaned up perfectly. I think a lot of people have this misconception. Someone with true OCD does may want their things in a particular way, but not jut because it looks nice or fits nice there, they take it to another level. It tortures them until whatever needs to be changed, is changed. The behavior they demonstrate is a result of whatever they are obesessing about.
Mental illnesses are not well understood in our society and they often carry sigma.  People often fear sharing that they have a mental illness because of judgement and shame.  I like to see it more as a “quirk”, it is something I struggle with at times, but it does not define me.  What defines me is that, I am a Daughter, Sister, fiancée, Teacher, Friend and so much more. I am not OCD.

Here is some background information about when this all started for me:

On day in the summer of 1998, my sister and I were watching TV downstairs. I remember hearing thunder and running upstairs in a panic. My parents were getting used to my storm freak outs so they were trying to help me through it.  We turned on the TV to check the weather, the power went off.  Then we opened the blinds to look outside to prove it was just a regular storm-the tree in our front yard was bent so hard that it was touching the ground. That is when we realized this wasn’t your typical storm and went downstairs.  Later we found out it was a tornado. I think the tornado may have registered at a F1.  The damage was minor and mostly consisted of down trees and derby thrown around.  We were without power for several days.  It completely rattled me.  I started to not want to go outside anymore.  Anytime there was a storm I was a complete wreck.  I remember my Mom buying me those fuzzy posters to color during storms because it kept my mind busy and at ease, at least a little bit. One of my Dad’s co-workers had an old book about the weather and they gave it to me to read.  I read it and I learned about storms, it helped me significantly.

I also developed a terrible fear of dogs, to the point that leaving my parents front porch was not an option because a stray dog might get me.  I had grown up with a large German Shepard/Lab mix.  She was sweet and gentle.  I wasn’t afraid of her but she passed soon after my anxiety had ramped up.  I remember not wanting to go to family members and friend’s houses because their dog might “eat” me.  Then, my parents bought Amy (my Sister) and I a puppy for Christmas.  A puppy wasn’t scary to me because they were so small and helpless.  We raised her and I swear to
this day that a lot of fear was taken away by her.  If a storm was coming she would lay with me until it passed.  She helped me over my fear of dogs by showing me how gentle they really can be.  Immersion therapy at its best.

In 1998 I lost my Grandmother.  She was in her early 70’s and she was the only Grandparent I had left.  My Mom’s parents passed away by the time she was 5.  My Dad’s father passed when I was 2 years old.  My sister and I were her only Granddaughters at the time.  My Grandma came to our Ballet recitals,stayed with me when my sister was born, came to school to volunteer and read to my class.  She was an amazing woman and I wish I had more time with her.  My Grandma fought Pulmonary Fibrous.  Her lungs were hardening everyday. She found out she had the disease the day that her husband, my Grandpa, died.  She lived 8 years with it, which is longer than most people do.  The doctors said that had my Grandpa not died when he did, she would have died sooner.  My Grandpa smoked in the house and it impacted her health greatly.  The night before my Grandma died we went to visit her at my Aunt’s house.  She was in a medically induced coma.   She was just laying there in a hospital bed in a room in their house.  I remember sitting in the room with my family, my Dad talking to her, and be given some jewelry that she apparently said she wanted my sister and I to have, and I remember getting slippers for some reason.  When we were leaving my Aunt’s house I remember sitting in the car crying hysterically.  I knew that was it, I was only 10, but I knew.  The next morning we were supposed to go to school.  When I woke up I noticed it was late and my alarm hadn’t gone off.  I knew she had passed.  My parents had turned off our alarms to let us sleep… a few more minutes of some normality.  We packed up our stuff and headed to Pittsburgh, where we planned and attended her funeral. In about a week we were home and back to “normal”.  My Grandma was an amazing person who I love very much.  Although she had passed by the time I was 18, she had set aside a piece of jewelry for my Aunt to give me on my 18th birthday.  Nothing as ever meant so much to me.

I cannot remember the exact timing of everything else but around this time my Mom got very sick.   The doctors could not figure out what was wrong for what felt like eternity.  She was in horrible pain all of the time and was just very sick.  I remember one night in particular that I thought I was going to lose my Mom because it seemed like her body was failing her.  I thought I was going to have to experience what she did with losing your parents at a young age.  It was terrifying. I specifically remember the terror, my sister was not much older than my mom was when my Mom’s parents died.  I was convinced in a way that it was our “fate”, and it was going to happen to us too.  Needless to say, the doctors eventually pin pointed the problem and were able to help.  During the time that she was sick, my Dad obviously was the one enforcing rules.  My Mom was always against us watching The Simpsons, but since she was sick and Dad was in charge so we got to watch it.  It ended up being something we watched as a family after she got better!  Thanks Dad! haha!

My worst fears have changed from storms and dogs to losing someone I love.   I worry at probably 10-15 times a day that something bad will happen to a loved one, each and everyday.  I imagine that I was probably born with anxiety.  However, the obsessive behaviors started around the same time as those events.   My life experiences have shaped my anxiety into what it has become.  Now, don’t get me wrong…I had an amazing childhood.  I was raised by two of the most loving parents. This just goes to show that no matter where you come from you do not get to escape mental illnesses.

My obsessions are always linked to fear of someone getting hurt.  My compulsions are always linked to an attempt to make sure nothing happens to that person.  It is like my mind is playing with me, trying to make me feel that I can control keeping them alive if I just do whatever is in my brain.  My compulsions are typically a random bunch of things.  I HATE odd numbers.  If I turn my radio volume up and it lands on an odd number I have to change it.  If I do not change it a family member may die in a car accident.  Sometimes it is that I must have the stupid dial on the dryer exactly lined up or I am screwed.  My compulsions sometimes consist of me seeing something on a fridge but not really reading it, but then I am forced to go back and read it in its entirety or someone has a heart attack today.   It is so frustrating, heart-breaking, and a waste of my time..  I don’t want to read what is on the fridge, I don’t care if the dial is lined up perfectly on the dryer, and numbers are just numbers.  However, my brain won’t let it go.  I know it is not rational to believe that I can keep someone alive by performing these dumb rituals, but I am terrified of what would happen if just by chance they did get in a car accident.  I would never be able to function again because I would always think, well maybe I should have done that, even though sensible me knows that it is completely irrational.  I’ve told my family over and over again that it is really exhausting to keep them alive all the time!  I can laugh about the thoughts that come in my head afterwards, because I know they are irrational and no where in the realm of possible, however in the moment I cannot laugh because all I feel is fear.  Who in the world wants to think about people they love getting hurt?  I know I don’t!  I wish I could just cross that bridge if it comes instead of obsessing about it all of the time, but I do not get that luxury.  One time my counselor said that I should focus on being with them and happy memories… so much easier said that done.  Instead I think, what if this is the last time I see them, what if, what if…

Fear tries to run my life, but I always try to fight back.  If you could hear inside of my head at an airport you would wonder how in the world I ever get on an airplane. I do because I can’t let it win, I fight like crazy.  I think airplanes are fascinating machines.  However, I am terrified of dying, not because I don’t want to die (which I don’t, life is pretty awesome and the unknown of death is scary) but I am afraid of what would happen to the people I love if I did.  Would my sister be able to function?  Who would call my Mom everyday at 4?  Would someone else love Kevin like he deserves?  And the thought of my Dad crying makes me want to cry typing this.  I don’t ever want them to feel pain.  I felt like a selfish jerk when I finally decided to reach out and get help for this because I felt like I saying I was putting myself before them. It felt like I had stopped their cancer treatment to keep them alive.  It is that crazy talk again going on in my head… I wasn’t controlling keeping them alive or safe by doing the things I was, I was just falling victim to the anxiety.

When I was diagnosed at age 10, I was placed on medication. I saw a counselor and a psychologist.  As I got older and with little understand of what was going on in my head I stopped the medication and therapy.  I managed for a long time.  I had the obsessive thoughts of people getting hurt and I tried to control it and sometimes I could.  I basically just gave into the compulsions because they didn’t completely interfere with my life, they were just annoying and confusing.  Then I got married.  I was under “fight or flight” all of the time. I had stomach ulcers and bleeding and all kinds of issues.  I ended up on anxiety medications during this time.  When I left my ex-husband I stopped the medication and I was doing pretty well for about a year.  Then anxiety let me know that it never left, I just suppressed some of it, but it showed it’s stupid ugly face again.  I was crying a lot at night because I was so frustrated with myself for feeling anxious all of the time. I experienced many more funerals and watched people grieve loved ones.  I have a very bad habit of putting myself in someone else shoes and then I get in extreme distress.  If someone loses their Mom then I think of how hard it must be for them and then I think what if I lose my Mom?  Then it spirals out of control. I started to get angry with myself because I am very aware of how irrational my anxiety can be.  I was tired of feeling “crazy” for being worried all of the time.

I still struggle but I am aware of now. Sometimes I do not respond to people talking the first time they say something because my anxiety in my head was all I could focus on, it consumes me.  I sometimes get frustrated if someone talks to me while I was stressing out about something because it is interrupting my obsession/anxiety and I was trying to work through it.  I’ve snapped at people I love when this happens.  I struggle with noise, I hate anything loud, it just makes me feel nervous.  I hide from people in my room or in the bathroom sometimes, just because I need quiet for just a few minutes.  I have found my own ways to cope with the anxiety at times.  Sometimes I give myself a “timeout” if I feel like I am going over the top.  I research things that make me anxious such as airplanes, weather, etc.  This has helped me tremendously.  The more I understand something, the less I am afraid of it.  I have not conquered my fear of losing people I love, it still haunts me everyday but that is okay… I win more than I lose to anxiety! I 1,2,3 things when I am scared (read 1,2,3 go blog to understand this).  However, I think the biggest thing that has helped me is talking about it and accepting it.  I hid from this for a long time… 17 years! I was shameful, embarrassed, mad, frustrated, and basically any other emotion you could think of.  It is not fair that I have to take medication to keep my anxiety levels lower.  However, it is not fair for me to live in a state of panic 24/7 so I thank God for science to give me this relief so I can enjoy this beautiful life.  No one has a perfect brain and we all fight our own demons.  Be honest about them, most importantly to yourself, because with that comes the opportunity to live the life you deserve.

My Grandma & I

My Grandma & I