Genetic Study, 6 years and Support

This week has been a crazy busy week! I can't believe that it is already Friday.

I haven't mentioned it yet, but I am part of a genetic study that a Women's Institute is doing out of Pittsburgh. They are doing the study on 1,200 people. It is only on women who suffer from POF, 1% of women in the world have it and there isn't that much research that has been done. There is no cure for it and the only fertility option is donor egg. The study is being done to see if there are any genetic links to what causes it or how someone gets it. There are some autoimmune diseases that they think cause it but once you are tested for that and it is negative, you get an answer of unknown. Which is what I was told.

I had to fill out a consent form and the history of my cycles, then have about a 15 minute phone conversation with one of the case workers. We went over my history and then family members history. After that they sent me 3 tubes for my blood that I was able to have drawn here. All I had to do was go to the doctor, have them draw it and then ship it back to Pittsburgh.

Blood draw for genetic testing

I have always said since my whole journey started that if I can help just one person through this in the future that would make me ecstatic. Although I probably won't see anything from this study that will pertain to me, it should be able to help future generations out and that means a lot to me.

Part of this testing is also that they are able to get my families DNA as well. Most importantly my immediate family, and then any of my aunts, uncles and first cousins. I asked for their help and have had an overwhelming response. I always knew I had an awesome family but this just proved it to me even more!

Tuesday we celebrated our anniversary. We went on our very first date 13 years ago and were married on that same day 6 years ago. It ended up being a great day. We were both working but made time to see each other for lunch and then went out on a romantic date for dinner. I have the most amazing husband, always my rock and my cheerleader. Sometimes I get down about our infertility journey and he is always there to lift me up. I really have been blessed by having him and his family in my life. I couldn't imagine my life without him in it.

Anniversary Dinner at Theo's Steakhouse

I have been part of an Infertility Support group since I found out about my diagnosis. It is a group on Facebook. It is private so the only people in it are people that are struggling with infertility that are in the area I live in. We talk about doctors, ask questions, etc. It has been very helpful. Since last week was National Infertility Awareness Week the administrator asked if we would be interested in having our first ever support group meeting face to face.

I was a little nervous at first. I haven't ever met anyone in the same position as me that is still struggling through it. I have talked to people I know that have been through it, but ended up having children. Just not the same thing as I am experiencing right now in my life. I wasn't going to go at first but then decided it would be good for me, and I am so glad that I did.

There were 4 of us that were there, we met at a local coffee shop that had a door that could be closed so we could talk about whatever we wanted. We were there about two hours and it was such a breath of fresh air. To actually talk to people that understand what I am thinking and going through with doctors. Fighting for your own health. So glad that I got to meet these wonderful ladies and can't wait for our next monthly meeting.

First ever NWA Infertility Support Group

RESOLVE to Know More

This week is National Infertiliy Awareness Week (NIAW). NIAW is celebrating 25 years this year. What a great group/organization to get the word out there and to be the main source for support groups and resources. I am doing the Bloggers Unite Challenge to bring awareness to our situation and to get people talking about infertility since so many couples suffer in silence.

I resolve to learn more about the disease of infertility. It affects 1 in 8 couples. Most of these couples suffer in silence. 

If you haven't read my blog before, I suffer from Premature Ovarian Failure/Primary Ovarian Insufficiency, better known as POF/POI. Only 1% of women in the world have it which makes it hard to find a doctor that knows much about it. 5 - 10% of couples have spontaneous pregnancy. The only other option given by doctors is donor egg using IVF.

My husband and I first told our families of our infertility right away. For awhile we didn't talk about it to others. It was embarrassing to us and we didn't know anyone else who had the same issues. Infertility can be a very lonely world most of the time. Once we decided what path we wanted to take I began blogging about it. It was  is a great release for me. 

I have always said that if I could just help one person I feel that I have made a difference. 

We have chosen a more natural path to try and beat the odds that are just a number. We will never give up HOPE. 

I resolve to teach people what to say to couples struggling with infertility.

One of the things we have experienced many times along our journey is "just adopt". Just that simple, right?! Actually, no it isn't. There are many things that go in to adoption: Learn about the process, select an agency, complete a home study, search for a child, exchange information with child's agency, be selected for that child, meet and visit the child, receive a placement and finalize your adoption. It is not a simple process. And then you add in to that the emotional process of it. 

Infertile couples are aware that adoption is a choice. You don't need to tell them that. But, the thing that hurts when that is said is that you as a couple have to come to terms that you may never be able to have a child of your own. I don't know about you, but that is not an easy thing to come to. It has been one year and two months since I was diagnosed and we are still deciding what our next steps will be. It is not something that we take lightly either.

What you can do for an infertile couple is just be there for them. Talk about the hard things with them if they are willing to. If they aren't willing to just treat them as you normally would. Don't make every conversation about their lack to have children. Do remember them on holidays - they are especially hard. Most holiday's revolve around children. Also, remember them on Mother's/Father's Day. Even though they aren't parents yet they are grieving it so it is an extra hard holiday for them.

We are 1 in 8. 

Please click on these links to learn more:

• Basic understanding of the disease of infertility
• About NIAW

A Dream is a Wish Your Heart Makes...

Wow, I can't believe that it has been almost a month since I have updated my blog. Life has been kind of crazy and busy lately. Which is a good thing because I haven't had the time to be down and sulk about my situation.

Not a whole lot has changed. I am still doing my daily routine. Taking herbs/supplements in the morning and evening. Still going to Mercier therapy every other week. I am taking a break from acupuncture. We discussed it and I am taking about 6 weeks off to give my body a break (per my acupuncturist). I have missed it. It is so relaxing to me, and each time I would go it would knock me out cold in to a deep sleep.

I got my thyroid results back after being on my medication for 8 weeks and everything has leveled off. Which is a good thing. I was hoping to have been able to lose some weight, no chance. I was reading through a few things about hypothyroidism that says a person that has it has to work 3 times harder than an average person in order to see results. Add full blown menopause on top of that and life is just perfect! That really bothers me, but I am going with the mentality of one day at a time. I do what I can.

I have been in a rut mentally and emotionally the past few weeks. I thought that spring would be a welcoming season for me. Not so much. Nothing like everything being reborn from the winter months to really slap you in the face. Every day on my drive home I see the new baby calves and foals. Just another reminder that everything can reproduce but me. I know in my mind that this is a horrible attitude to have, but some days you just have your moments.

I have been incredibly sad too. Any little thing just sends me in to a flood of tears. This is so odd to me because at the beginning of my journey I was really upset and then once I kept going things seemed to level off. I know it just takes a toll. I am approaching a year on my natural path and haven't seen any results at all from it. Not even one drop (pun intended!). That bothers me...A LOT! At the beginning, I read success story after success story which really boosted my confidence. I know my chances are slim. I get that. If I was a betting woman I wouldn't bet on something that had a 5% chance.

I see pregnancy announcements, gender reveal parties, baby showers and new babies being born all the time. And I want that so bad. My peers are all having children. These ARE my child bearing days. This is what my body is supposed to do and it isn't.

But, then there is faith and there is hope. So thankful that I have both of them. Always there for me to lean on.

I have always compared infertility to the stages of grieving (I need to do a post on that later). And it could not be more true. The only thing is that you are grieving something that you have never had. Just a small glimpse of what we could have. I have never wanted anything so bad in my entire life. I struggle with the why all the time too. Why is someone that is addicted to drugs able to have children and I am not? I don't think that I will ever have an answer to that question. I know that I have to be patient and believe...but it is still so hard. The thing about grieving infertility though is that it keeps going. I don't know that I will ever have closure on it.

I was flipping through the channels the other day and Cinderella was on. Funny how when you are a kid you memorize all the songs to Disney movies, but I never thought about the words until I heard them that day. I feel like I was meant to hear that at that moment. And it couldn't be more true...

A dream is a wish your heart makes
When you're fast asleep
In dreams you lose your heartaches
Whatever you wish for, you keep
Have faith in your dreams and someday
Your rainbow will come smiling through
No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true

I have been reading this each day, as a reminder that I just need to keep on believing and my wish will come true!

Infertility Study Complete and Thyroid Labs

I finished my infertility study that I was a part of. I was worried that I wouldn't have enough to talk about for the hour and a half sessions, but I was wrong. It really is crazy, a lot of times I feel like I haven't done that much or could be doing more with my diagnosis. But, when I look back in my book and on my blog I have really accomplished a lot. Granted I haven't achieved the end result I am looking for.

The first session was a "get to know me" part. What is my diagnosis? What does it mean? What have I done in terms of treatment, etc? That was the easy part. 

The second session was more about the emotional part of infertility. I speak to my husband and family members and friends about my infertility. I have always been very open about it, it is not something I am ashamed of because I now know that it is not my fault. I struggled with that statement a lot in the beginning. Was there something I could of done? What if I wouldn't have taken birth control for so long? But, that wasn't going to get me anywhere. I am a fixer by nature, when you have a problem, you fix it.  It is what it is and there is truly nothing I can do to change it. There were definitely some deep questions. And it took me back to a place that I haven't visited in awhile. I got choked up a couple of times. Not being able to have a child and grief go hand in hand for me. I have mostly happy days now, but somehow the grief part of it has a sneaky way of coming up on me. 

The third session was just a recap of  what we talked about the first two sessions. One of the questions that she asked me was "How does infertility define you?" That is not something that I have ever thought about so it was a hard question for me to answer. I wish I could say that I haven't let it define me or that it doesn't define me but that isn't true. It has changed the person that I am today. I have a lot thicker shell than I used to. I am a lot more sensitive to things than I used to be. It is constantly on my mind. I just know in my mind that all of this is for something else. Just have to be patient and see what that is. I know in my heart that one day we will be parents.

All in all I am really glad I did the study. It taught me a lot about myself and helped me get some emotions out that I wouldn't normally talk about.

I had my normal acupuncture appointment a couple of weeks ago. She suggested that I take the Barnes Thyroid Test again to see if any of my temperatures had changed. My average came back at 97.4 and it is supposed to be over 97.8 so I am still a little low.

I also went today and had my blood drawn for my follow up labs at my thyroid doctor. Hopefully, the medication that I have been on will have helped some. If not, we will just keep increasing the dosage until I get to the right amount.

I saw this quote the other day and I love it. I kind of have a thing for quotes :) Sometimes they are what gets me through the day!

Infertility Study

A couple of weeks ago I linked up to a local blog that allowed people who are experiencing infertility to connect. It has been interesting reading through the different blogs and seeing how other people are coping. I have to admit it it feels good to know that I am not alone (not that I would ever wish this upon anyone). One thing I struggle with is that I know people aren't sure how to talk to me or what to say especially if they have never experienced it. It is kind of like a big elephant in the room with awkward silences. So when I read/talk to others going through the same thing they just get it.

Through that blog one of the statements at the end was about a woman doing a study and if anyone was interested to contact her. I decided to do just that. When I started my blog it was to document our journey and to give hope to other women like me. When reading about this I felt like I had to join. Tell my story and be a part of the study. If I can help just one other couple, that would make me ecstatic! I was talking to a friend about it and she said maybe that is the purpose of this certain season of my life right now, I have to agree.

There will be 10 people involved in the study. There are three sessions over the course of three weeks. Each session being an hour and a half long. I will be shocked at myself if I am able to talk that long each time. My first interview/session is on Friday. 

I am a little nervous but also excited. I have said this before but I feel like knowledge is power. The more I put myself out there and the more I read and research this topic the better chance I have of being successful. 

Wish me luck!

Show Us Your Life - Infertility

I am linking up to Kelly's Korner blog this morning. She does a "Show Us Your Life" post on Friday's and today is about infertility.

I was diagnosed with Premature Ovarian Failure (POF) in February 2013. I had just turned 29 years old. I have been on my journey now for one year.

POF is the loss of function of the ovaries before age 40. Basically your body goes in to premature menopause. Most people with this diagnosis have hot flashes, night sweats, etc. All the signs of menopause. I have been lucky so far. My only symptoms are my high FSH and amenorrhea.

I was also diagnosed last month with hypothyroidism. This means that I have an underactive thyroid. There is a lot of information out there linking infertility and thyroid issues so I am hoping this will get me one step closer.

Since I started my journey last year I have decided to take a more natural approach. I have been to numerous doctors, 2 fertility clinics and have received the same information from all. That I have a 5% chance of getting pregnant on my own, the same is true if I were to do IVF, only 5% chance with that as well. Since the percentages are so low the only option they give me is donor egg through IVF. My ovaries aren't working but, my uterus would be able to carry a baby.

Back to the natural part. I take herbs/supplements each morning and night. I have been going to acupuncture. I started Mercier Therapy (natural/manipulative therapy on your abdomen). All in an effort to get my body back to what it is supposed to do.

One thing I have learned throughout my journey is that you can never give up hope. It isn't easy, everyday reminders of pregnancy, people my age all having children. Infertility can be a very lonely world. Everyone in my life has been very supportive but unless you have gone through it/are going through it, it is hard to understand.

I have really learned a lot about myself so far. I am a lot stronger than I ever thought I was. My husband is amazing, I knew this before, but until you go through something this hard I guess you don't appreciate it as much.

I am happy about our decision thus far. For now we don't want to do the donor egg/IVF option. We have talked about fostering/adoption. But, aren't in a hurry. We do have some time. One other thing that I have learned is to take time to think about large life decisions. Everything does get better with time. A year ago at this time I was much more emotional/raw. Since then, I don't cry as often and have become stronger when talking about it as well.

My blog is about my journey so far. My hope is that I will be able to help just one person.

Will be praying for everyone going through this journey as well XOXO

The Big Three O and 1 Year

I turned 30 this past Friday. If you know me, I have been dreading this day for sometime. You see I always thought I would have a nice little happy family by the time that I was 30, doesn't every little girl dream about that? Good job, house, married and with children. I have 3 out of 4, just waiting on that last one.

My body apparently heard me talking about not wanting to have a birthday because I caught a horrible case of the stomach virus. So glad that is over with and that I am now on the mend.

Today marks one year since my diagnosis of POF. CRAZY..I can't believe it has already been a year.

I will never forget that day. Getting a phone call, going back to the doctor with Benji and then sitting in the car both of us crying, not knowing what to say. Calling my mom and sister and going to my sisters house and crying my eyes out to them. So thankful to have both of my families close.

Some days it feels like it has gone by slower than a snail but other days it seems like it flew by. I have learned so much about myself in the past year. With the bad always comes good. As I have mentioned before, I am a very organized person and LOVE lists. So, I thought I would make a list of the observations/things I have learned so far in my journey.

• I still wake up every morning thinking this is all just a nightmare and that it isn't true - not sure that this fact will ever change

• I am a lot stronger than I ever thought I was - tell me I can't do something and one day I WILL prove you wrong

• My marriage has only grown stronger from all of this and for that I am thankful - it has always been strong from the beginning. We go together like two peas in a pod. But, until you have something that can alter that, you don't realize what you really have. I have said it many times but my husband is my rock and has been so amazing through our infertility journey. He makes sure to always use "us" even when I mostly feel like it is me. He is so understanding and loving with his words, always finds a way to make me smile. I truly am nothing without him.

• I have cried more in one year than I have the other 29 years of my life

• I have met many new people in the past year due to infertility and our similarities. So thankful to have met these sweet girls, even if some of them have only been through the internet. Something about someone knowing exactly what you are going through makes things much easier.

• I have created/found an amazing support group to get my body back to its optimal health - doctors, acupuncturist, chiropractor, massage therapist (with that one I even got a true friend out of the deal - love you Ms Karen!)

• I have an amazing support system, friends and family both. Even though they may not always know what to say to me they are there for me and support me and that means more than anything to me.

• I have become more sensitive to people in general. Never again will I ever ask anyone I meet - "When are you having kids?" That is such a loaded question and really puts someone who is struggling through infertility in an awkward/emotional position. 

• I have found out that in today's world with medicine you have to do what is right for you, even though someone tells you something that they say is your only option you don't have to listen to them. Take time to think through all your options so that you can make the best one.

• I am thankful that I am not $20,000 - $40,000 in debt from infertility treatments

• Life isn't fair

• Time really does heal all wounds - I am a lot tougher than I was a year ago at this time, I cry a lot less frequently. The pain is still there but it seems easier to cope with.

I saw this quote online today and thought it was so fitting. I love it!