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Can I tell you a little secret?

I’m scared. I’m anxious. I feel a little like a failure…well a lot like a failure but we’ll get back to that in a minute. Thursday is the day we meet our second RE in the last 19 months. We just want a second opinion. Dr K.’s office says we can either go back on Lupron for another 3 months or have the worst periods ever and continue on that path until we are ready for IVF. At this point all my numbers are low. And by low I mean they are basically non existent. When I asked the nurse that works with Dr. K what to do next, like could we do a round of femara with a trigger shot and try on our own? Can we do the femara with trigger shot and then plan another IUI? I could hear the heartbreak in her voice because she said I’m sorry but the best thing you can do is to save up the month for IVF because no other is going to work for you. That’s when Russell brought up the idea of getting  a second opinion to see if they see something or have a different type of treatment that isn’t going to break the bank. What makes this harder is knowing nothing is wrong with Russell, thank goodness. His labs and analysis all came back extremely well and I am so grateful for that. But that means I’m the one that’s broken. And 13 months into a brands new marriage this is tough. I knew when we said for better or worse and sickness and in health  that phrase would ring so true over for us right now.

I know some people have asked about why we chose to see another RE (reproductive endocronologist) because Russell is all about asking questions. He is all about making sure we leave a meeting knowing every little detail before the paperwork has even come to our mailbox. I love that about him because in situations like we’ll be in I freeze and can’t think of anything to say. I just write down the answers and make sure we can discuss everything on the car ride home. We are also seeing another RE because I’m still in a lot of pain and I feel like I”m being heard. KRM is a great establishment with one of the highest live birth success rates. Dr. K. has been nothing but nice and straightforward with me and with Russell. But a second opinion never hurts because some doctors think more outside the box while others don’t.

I also don’t know if you all know this but Russell and I wanted to have 4 or 5 kids. In the very beginning stages of our relationship we would talk about how cute babies are and one day we’d have our own. Well Lena made her debut as a ‘Young’ about a week later. He thought I was taking her back but she was stuck with us and the other two that following. More about their stories in another blog. I got off on a tangent there for a second. My point is Russell and I have always wanted a large family. Now I’m not sure what we’ll have. We will definitely implant two maybe more depending on how we feel about it and see what happens from there. If somehow the universe will allow my body to make a few eggs we’ll let them become fertilized and freeze the healthy embryos in case we decide we want one more try at it in the future. Needless to say I’m sure you feel a little stressed reading this. This is what I go through on a consistent basis. Throw in some random questions like ‘why did Russell marry me know I have a disease that is incurable and children may not  be an option. And the am I pretty enough? Am  I good enough because with the way  I look and feel no man should have to look at it. But each time he says he loves me, he thinks I’m the most beautiful woman in the world and that children or no children we’ll be just fine as long as we have each other. Please send your positive vibes out for us this week and every week because infertility is bad but knowing it’s what you’ve always too is heart breaking.

Until Next Time

xoxoxo

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Still having Hot Flashes…

This week has been filled with highs and lows. Needless to say I’m ready to relax tomorrow and forget the world exists. July 25 I went into the fertility doctor’s office and they gave me the shot. They said once week 12 hits I shouldn’t have hot flashes, insomnia, etc. I’m having the hot flashes and even worse the ever before. My ears turn bright red,  my nose turns red and my entire body from top to bottom sweats so much you’d think I Just ran a marathon.

It’s been a long week because there has been a lot to do. I had to schedule our second opinion. We’ve decided it’s best to go to Cincinnati. I already see a Nuerologist at UC Health. Dr. Vij. He’s amazing and the reason I keep going back to get my botox! I’m getting my last botox treatment until after we give birth. In order to get botox I have to count four months out on the calendar and know when we’re in the safe zone to conceive.  But I am excited to meet this new guy and see what he has to say. Everyone is going to be different but I hope he will hear me when I speak to him. We have a lot more reasons for choosing UC Health but getting the best care is what is most important to us, especially if I have to pay for everything then I’ll make sure  we are seeing the person we want to see. Not to mention our current doctor can’t see us until we are ready to begin IVF treatment. We feel this is the perfect time to get a second opinion. I realize all the costs that are associated with infertility but I am signing up to get pregnant.

But I’ve had such a down week. It all began at the beginning of the week because I was feeling awful. I had to cancel a few appointments I had with friends and with my doctors simply because I couldn’t get out of bed. I cried a lot and  said to the universe ” why is this happening to us? I’ve been a little unstable emotionally this week. Every little thing stressing me out. I’m noticing negative thoughts are entering my space. Thoughts talking about me as a mother, how do I deserve a child over someone else, am I ready, etc. All these questions are consuming me and for a split second earlier this week I thought maybe I’m being punished for something I did in a past life. But I’m coming around now.

Some days are better than others and I’m still learning how to deal with emotions that infertility brings.  As also, please hug a friend extra tight and let them know you’re there. Even if it’s just to text about their day. I have a very small circle of girlfriends and one of them has been so understanding of why I can’t do things when I did say I could do. She understands how much this takes out of me. I’m not ignoring anyone if they are trying to hang out!

Until Next Time

xoxo

 

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The little things make you realize how much you want a baby, but also how possible it could be for one couple and impossible for the other couple. I am 1 in 8.

I was watching one of my favorite shows, Eric and Jessie on E!. They were talking about whether or not to have a baby and if they’d try for another because they said it was easy for them. Her sister who was pregnant at the time said well how are you feeling? So naturally Jessie went to take the test. Eric walks in and is asking what they’re doing and he sees the test is negative. The next scene is the family hugging together saying it’s not meant to be this month. See that brought back so many emotions and I started crying. For those that haven’t caught on yet, crying is one thing I’m pretty damn good at.

But in all honest the memories of the TWW a few months ago were brutal. They were more than brutal. There were days that felt like they were drag on so slowly and we’d never get to test. Then test day comes and you don’t really sleep the night before because you’re so anxious you have to know. I am also a super type A personality.  I also remember wondering the entire time “are we pregnant?”. The first time I thought for sure because I was having some unusual cravings and then I was having a few pregnancy symptoms but the test came out negative anyway. That was more heartbreaking than my boyfriend in high school saying I was boring and he wanted to date someone else. It was more heartbreaking knowing my body couldn’t do it. Then the second time we did the TWW and I felt nothing. Not one symptom. No tiredness. No nausea. Nothing. And sure enough the test was negative. The feelings of loneliness and depression have been sinking in lately. The holidays are coming and I’m wondering what the next few months will look like. I’m working as much as can without wearing myself out but all I think about is when it’ll be our time. It’s funny (not really) but I’ve been told that if this the path I’m walking and being guided down then maybe God is saying I don’t deserve to be a mother. I think that’s rude and harsh but that’s her opinion so I’m deciding to leave that there.We’ll start the IVF process at the very beginning of spring after the holidays. I’m looking forward to continuing fighting and going through hell and back.

For now, it’s ovulation kits, timed intercourse, and trying some wives tales on how to get pregnant.

Until Next Time

xoxo

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That moment you realize no one believes you or your disease

I came to the realization that there are doctors, more specifically those who don’t fully understand what endometriosis is, and therefore think I’m faking my pain. It all started last Saturday at Kettering. I was in the ER for excruciating back and pelvic pain. I get back to a room where I wasn’t given an IV or anything. After a few minutes a lovely young lady walks in. I see she has a notepad and is in scrubs. So basically she’s a student learning for this shift. She sat down and asked the usual questions : why are you here? where is your pain? what has caused this pain? can you explain in more detail what endometriosis is? have you had surgery in the past? Tell me more about your surgeries. And this goes on and on and on and on because so many nurses have never heard of the term endometriosis before they encountered me. After sitting the room for over an hour, I’ve asked for water because I’m getting quite parched, they ask me to do a pee test. Now if I hadn’t seen what I did when I walked in maybe I wouldn’t be second guessing the reasoning  behind it all. And when the nurse came back into the room and said my sample was fine they just wanted me to make sure there wasn’t anything in my system. After that it was like here’s an anti-nausea pill and a shot of morphine and you get to go home now.

Here’s why I’m complaining. When a doctor can’t “see” pain it can be very hard to diagnose. But I feel like a lot of the time when things get too hard or their priorities shift they’re just like this girl needs to go there is nothing we can do for her. So now we are back at square one. I have an OBGYN appointment tuesday. As you can tell its 3am. I’m in more pain than you can imagine and the pain in my lower back is starting to spasm.

Until we have a day where information about endometriosis comes out and there is a cure or even a way to detect it, this is how endometriosis will continually be treated.

Until Next Time

xoxo

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Endometriosis Awareness Month

All month long I’ve tried to think of what to write. For some reason the words are there but I can’t seem to formulate the right sentences to create a coherent blog post. Here’s my best attempt to put everything into words 🙂

March is endometriosis awareness month. I’ve been reading stories all month from women sharing their stories, their fears, their goals, and what they hope they can accomplish by sharing what they’ve been through. The stories I’ve read all vary from women who have just been diagnosed to women who have known they’ve had this disease for a few years or more. Then I read one where a husband shared his point of view on what it’s like to take care of someone with endo. The story was awe inspiring. For me it touched a special place in my heart. It made me feel vulnerable in a way that I started crying. His words were so sweet and kind. He was gentle when he described the way he cares for his wife daily. I think that’s something that most people who don’t have this disease realize. When a man decides to marry a woman with this disease, he is marrying someone who is going to be tired, sick, and have flare up’s so bad nothing but an ER visit can take away the pain. Naturally, when I was reading this blog post I thought of Russell. I think of every day when I have to tell him my back hurts, or the cramps are more than cramps. Ironically its been 365 days since my 2nd surgery… ya know the one where they had no choice but to take out my left tube and ovary. It was that hospital stay that I asked him “Are you sure you want to marry me? What if I can’t give you children?” It was in that moment of imperfection, laying in a hospital bed, so drugged and sick that he told me he loves me for everything I am and if we can’t have kids then we have each other. Ladies, the one thing I know about Russell is how much he wants a family. His desire to have a family is strong. When a man marries a woman with endometriosis he marries the idea that children may not come. I thank the universe for Russell every day. My husband is an endo husband. He takes care of me. He tries to make my pain go away and comfort me when I’m at my worst. If you or someone you know has an endo husband, hug them tight. They are hard people to find. They are like finding a needle in a haystack. Endometriosis can put stress on a couple. It can make you both for guilty. Us women feel guilty for our spouses because we are keeping them from a healthier person. At least that’s one of my biggest guilty feelings. I tell Russell all the time that he could have been with anyone else. The guilt of being sick all the time creeps in and makes me feel awful. I think that’s why I needed to read a story about a couple going through endometriosis, and the article being written by the husband was on point. He committed to being the best endo-husband he could be. He told the readers of how many heating pads they have and how it doesn’t take him long to heat them up for his wife when she has a flare up. He also talked about how he knows when to step in and tell his wife to rest and when he knows she can push herself. An endo-husband is a caretaker and without them us wives would be lost.

I want to thank my endo-husband. Thank you for baring with me during the last year. I know four surgeries was tough. Four surgeries were stressful emotionally, physically draining and mentally challenging. Russell has been there for the darkest days of my existence. He has seen my biggest fears with endometriosis. He attends IVF appointments to educate himself further. I also am thankful for my endo-husband because every day he tells me we are going to be parents and he’ll see me grow through motherhood. I’m thankful every second of the day for my awesome husband. I am thankful for the support, advice and love he has given to me in the last year.

Having endometriosis is debilitating, it’s frustrating but in the end endo is apart of me. I have learned and grown so much this last year and I hope that if you are following this journey I have taught you a little something about endometriosis that you didn’t know before.

Happy Endometriosis Awareness month March!!!!

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Endometriosis Awareness Month

March just so happens to be endometriosis awareness month. This blog is dedicated to my journey thus far and by the end I hope to give you a better understanding of what endometriosis is.

Endometriosis is difficult to define. A lot of people don’t know what it is and a dear friend of mine sent me picture of what endometriosis is like. Here is what is says: “In the body of a woman with endometriosis, the lining of the uterus that is shed every month during is unable to be shed, so it’s reabsorbed by the body. It then sticks to other organs and grows like weeds in a garden, wrapping around and over organs. Endometriosis creates chronic pain, sometimes infertility, digestive and bowel malfunctions and chronic fatigue. There is no known cure.”

This is a very accurate definition for what endometriosis is and does. I was introduced to what endometriosis is because my sister has the same condition. Since we have the same DNA it makes sense that we would both have the same condition. If I’m not mistaken she has stage 3 endo. She, too, has had several surgeries to help remove scar tissue that was causing her pain. Thankfully she hasn’t needed to have any surgeries in the past 6 months.

I realized something was wrong because my periods were like hell, well worse. My cramps were so bad I would become nauseas and couldn’t eat. My back hurt so badly from all the pressure. Midol wouldn’t touch the pain and the only way to get rid of the pain was to sleep. After an ER visit because I couldn’t handle the pain, I went to my OB/GYN to then discover I have endometriosis. February 2, 2016 I had my first surgery. My tissue was removed but not completely. The surgery was supposed to fix the pain but when I went in for my check up I had two options: have another surgery, more extensive with a hospital stay or have a hysterectomy. Obviously I chose option 1. 30 days after surgery I had surgery number 2. This time a robot was used to see exactly what was going on. My bowels, uterus and ovaries were all enveloped in scar tissue. My left ovary and fallopian tube were so badly damaged that they had to be removed. I woke up from surgery in a lot of pain. I was given a shot to stop my period for 3 months so I could heal and not have to worry about being in more pain. I will scars all across my stomach because of surgery. I have a 25% chance of having a baby on my own and I hope and pray that this will be all I need.

Here’s what the doctors don’t tell you about endometriosis. The shot that I was given stopped all my parts from functioning so now at 26 I am “menopausal” because I’m not ovulating. I get hot flashes all the time, I can’t sleep and my incisions hurt…bad. (Once the shot wears off I wont be menopausal anymore) I also feel guilt and shame over my condition. Endometriosis isn’t just affecting me, it’s affecting Russell. There are days that I am so sad because I want to give him a family. We have always dreamed of having 4-5 kids. I see people and their kids and wonder if I’ll be able to have that. I hope and pray that when we get married we’ll be able to have a baby the natural way. I know that having to see an infertility specialist is something we’ll have to do if I can’t get pregnant. I am beyond thankful for Russell. There have been times when I cry to him, apologizing for my condition. Each time he says we are in this together and no matter what his love for me doesn’t change. He loves me, endometriosis and all. He takes care of me, makes me dinner, helps me get dressed when the pain is so bad I can’t bend over. He is always there for me. He goes above and beyond all expectations I had for my soon to be husband. But he has always taken care of me. He gives me hope. He is my light in this dark tunnel. He loves me unconditionally and I couldn’t ask for better partner in life.

I had my checkup this past Monday with my OB/GYN and he says everything is healing nicely. He was frank with me and my entire life was put into perspective. He said I am in the top 5% of the worst cases of endo he has seen in his career and I am the only one who has been able to keep my uterus and right tube and ovary. There are plenty of days that I feel alone and wonder why this happening. I often wonder if there was something I could have done to prevent this. I hope one day there is a cure.

Please say a prayer for all the women who have this condition. Below is a link to an article from Huffington Post about what women with endometriosis want you to know.

http://www.huffingtonpost.com/entry/endometriosis-what-to-know_us_56e1f8eae4b065e2e3d567ac

XoXo

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I Am That Girl

As many of you know, I am now the new Dayton Chapter Leader for the AUH-MAZING non-profit organization called I Am That Girl. For those that don’t know this non-profit is a fairly new organization. I am beyond grateful to be the leader for the city of Dayton. So here is some information so you can get to know a little bit more about what I will be doing and trying to accomplish.

I AM That Girl (IATG) was founded in 2008 by Alexis Jones and Emily Greener. Their mission is to empower young women through having honest and open conversations in a safe environment. Thank goodness for women like them starting their own non-profit to bring women up, not tear them down.

I decided to get involved because all too often we see how awful people can be towards one another. I have seen first hand the way young women are spoken to and I want to change that. I want to change so many things about our society (but that’s another post for a different day). I want to change how women view themselves. How many times do we say “I’m fat” “I’m ugly” “I’m not wearing a cute outfit”…the list goes on. I want to change that. I want girls to say I’m pretty without having to wear a lot of makeup. I don’t need to be a certain size for me to think I’m pretty. I want women to say my body is the way that is it and I’m so thankful for the way I was made because that’s what makes me unique. We all can’t be the same. We all can’t look the same. BUT we all can defy the Hollywood stereotype of what makes a woman beautiful. I’m telling you what ladies, ALL of you reading this is beautiful. You are all unique and that makes you special. You don’t have to be a model to be pretty. You don’t have to have a lot of money to be pretty. What makes a person pretty is what is in their soul. Are you the kind of person that wants to see others succeed? I hope so.

I personally believe your vibe attracts your tribe. If you are negative you are going to get negative friends. If you are positive you are going to get positive friends. You can’t lead a negative life and expect to get positive results. What you put out into the universe is what you will receive. So surround yourself with like minded women who want to change the word. Because I tell you what, it only takes one woman’s fierce determination to change one thing. It’s better to change one thing about the world and leave it a little better than you came into, than to not try at all.

Until next time!

xoxo