Fertility struggles

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Alright, before I begin, I would just like to say that I’m still not 100% certain that I’m not fertile. However, after my doctor’s appointment today, I’d like to talk about struggles with fertility and how the possibility of being infertile has made me feel recently.

So, my periods were pretty regular and rather heavy from the time I first got it around the age of twelve until I was fifteen or sixteen. Then I only got my period every few months and it was just some spotting. I know, in the perfect world, you’d barely get periods which is what I initially thought. But, after a while it was kind of concerning. I was getting my periods and now I’m not? What?

Of course, doctors offered me no answers. In 2011, I got some bloodwork done to figure out what was going on while also putting me on birth control. For the record, I didn’t get the results of the bloodwork until today. But more on that later.

In my mind, I thought that maybe I’d been on birth control long enough that maybe my period was regular now. But…no. So I went to the doctor today. Something must be wrong, right? I was thinking the worse. PCOS? Cysts on my ovaries? Or maybe I didn’t have any eggs left. I’m only twenty-two but as I said, I was thinking worst case scenario.

So, I went in today and told the doctor everything. She showed me my bloodwork from 2011. All my hormone levels were normal. However, my testosterone levels were a bit high. Normal for a woman looked to be thirty-six or thirty-seven and I was at forty. That seemed odd to me but the doctor didn’t appear to be shocked or really comment on it so I figured that must not be a big deal so I stayed quiet. She gave me a pelvic exam to make sure everything felt alright. She was hesitant to do so since I’ve never had sex and I don’t use tampons. Guys, if you’re feeling uncomfortable right now, I give you my permission to leave and have a good day and I’m not taking it personally.

By the way, her hesitance to give me the pelvic exam was justified because I swear it felt like I was being torn. BUT ANYWAYS, I felt it needed to be done just in case there were any abnormalities she could fell. But as far as the physical part, I’m normal. She didn’t send me to get bloodwork which I wish I’d asked for.

So, she basically tells me that some women don’t ovulate every single month and some women only ovulate every 3-5 months. So, if I ever tried to get pregnant, my window is much smaller than most women but it is possible.

Here is why that answer PISSES ME OFF. Because that’s probably the third time I’ve gotten that answer and it’s just not enough. My main mistake was not going to a gynecologist. I should’ve just done that. I’ve figured out that the “some women don’t ovulate every month” answer is basically their way of saying “I have no fucking clue what’s wrong with you.”

I know this isn’t a huge issue. I’m only twenty-two after all. I’m not even close to having any kids. I don’t have a boyfriend yet for crying out loud. The problem is that I’ve always wanted to be a mother. Ever since I was a little kid, I knew I wanted to be a mother. Hell, I’ve got names picked out. And I never thought this would ever happen to me. It’s extremely frightening. The doctor said if I ever did get pregnant, would I be able to carry the baby to term? When I did get my period, it was spotting. I barely bled at all. Would that affect anything? I don’t know because I was too busy trying to not cry to ask the doctor anything.

Her only solution was for me to simply get back on the birth control pill. However, the depression I was feeling was only intensified by the pill. It could be that the pill was the actual cause of it. I’m not entirely sure but I do know that since I’ve gotten off it, I’ve felt a lot better emotionally and I don’t really want to get back on it if I don’t have to. If I become sexually active, obviously I’m going to get on it. If you can take the pill (I know some people, it makes them physically sick and some people suicidal) then please, please, please take it and use condoms. Protect yourself!

She said to give my body another two or three months to allow my body to reset since I’ve been on the pill for the last six years or so. I don’t want to panic yet. I want to believe that I’ll be alright. But I can’t shake the feeling that the one thing I want in this life will be the one thing I won’t be able to have. When the third month passes and I inevitably don’t start my period, I’ll go to a gynecologist, get some REAL answers instead of another bullshit “You’re normal don’t worry” answer.

So…I suppose this is the part where I give my advice? Well…I wish I had some. I’m still trying to process the idea that having children will be extremely difficult or won’t happen at all. How does one deal with that? I’ll get back to you on that one my friends. I’m still trying to figure that one out myself.

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Dealing with Grief Part 2: Our Song

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So, this past weekend I was in Vegas. My mom and step-dad had bought tickets to see Celine Dion live which is a whole other story I’m not gonna get into today. My Vegas trip is another story for another day. However, seeing Celine Dion perform was an extremely emotional experience for me for two reasons. The first being that I’ve wanted to see her live since I was four or five years old and when the curtains parted and she was standing there in her shimmery golden dress, it was like seeing the queen.

But the second reason is the point of this post. Some time ago, I talked about one of my best friends named Jennifer who died of brain cancer back in July of 2015. But before that day, when she was still alive and well, she would send me things all the time saying “this reminds me of us” as friends do. One day, she sent me a link to the song “Because You Loved Me” which is a Celine Dion song I assume most people know. It’s one of her popular songs. She told me it was our song and of course I thought it was so sweet and I did love that song and it did suit us quite well. But, I didn’t realize how much that song reflected how I felt until after Jennifer died. As I’ve said before, Jennifer came into my life during a very dark time and she was the person that pulled me out of it for the most part. I still struggled with it but I had someone who could relate and knew how to help me. One of my biggest regrets was not telling her those things. But, I’m repeating myself. Back to the point.

I was already emotional just from seeing this amazingly talented woman singing her heart out on stage. But then…do you see where I’m going with this? She started “Because You Loved Me” which then transitioned into “It’s All Coming Back To Me” which always makes my heart ache. Basically anything by Celine Dion involving that subject matter will make me cry. My Heart Will Go On, Recovering, etc. etc. I will cry.

My mom had asked me after the show what was the most emotional part of it for me and I couldn’t bring myself to tell her. As I said in my last post, my mom never understood why I mourned Jennifer as much as I did because we never met in person. Over time, I just stopped telling my mom things because it was just easier to suffer in silence than get no response from her. For the record, I love my mom but we are two different people and she’s difficult to talk to sometimes. I still adore my mother. Don’t get it twisted.

Anyways, when I got back to my hotel room and I was alone, I burst into tears. I sobbed with my soul. But they weren’t sad tears. My heart was so full in that moment, almost as if Jennifer was present. They were happy tears. Even though Jennifer isn’t here physically, the two of us shared that moment. I know she was there. I may have felt her presence but I’m not entirely sure. It was a beautiful moment, hearing our song like that. Jennifer was there and she felt it too I think. Knowing her, she was probably crying with me.

I still miss that precious being ever since she drifted from my life. But hearing our song made it feel like she was with me again. And to be honest, I felt a hell of a lot better. It’ll be two years since she died in July and that little two minute moment filled me with such peace that the anniversary of her death might be easier on me than it was last year.

I guess my point is that although the grief will never go away, it is possible to resume your life. Your loved one will make their visits and you’ll feel it. You’ll have that moment where your heart is full and you’re at peace. It took me almost two years to get to that point. But if you’re not there yet, you will one day.

 

My Life As His Sister: Does autism need a cure?

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This question had never really crossed my mind before. But I’ve been thinking about it a lot lately. Does autism need a cure?

It started about four years ago during my dad’s charity event called Metal Jam which raises money for autism. People sign up to play some metal and there’s a raffle and prizes and all the money goes to…well…it used to go to Autism Speaks but after some research we realized we shouldn’t have been donating to them and my dad found another charity to donate the money to. In any case, it brings people together every year and raises thousands of dollars. And my dad brings my brother up on stage to play one of his favorite songs which is always a big tear jerker. Anyways, back in 2013, Derek Riggs (the man who created Iron Maiden’s mascot “Eddie The Head”) designed some shirts for us which were super cool. He had posted a picture of the shirt on his Facebook page and someone had commented basically saying, “Autism doesn’t need a cure. I’m autistic and I don’t need a cure.”

It was either Derek Riggs or his wife that responded very politely telling them that there should still be research, I’m not 100% sure what was said as I didn’t see the post. My mom saw it and told me about it.

But, I kinda forgot about that little event until today when I saw a clip of the debut of the first character with autism on Sesame Street, which was so amazing and so pure and so innocent. I have been waiting my entire life to see acceptance and representation for kids and adults like my brother. Well, my brother is much more severe than the character they introduced BUT autism is different for every person as far as severity goes. And regardless of what severity of autism they gave this character, I absolutely love how they explained it and how they handled it all.

All of a sudden, I see comments like the one that popped up on Derek Riggs’ post on Facebook four years ago. “Autism doesn’t need a cure! I’m autistic and I don’t need a cure!”

And it got me thinking. Are they right? Does autism not need a cure? Do you really want my answer? You might not like it. Because I do think it does.

I understand why people with high functioning autism would say it, I really do. I struggled so much when I was young seeing the looks on people’s faces when they saw my brother and saw how he behaved. It’s hard living with the judgement I get that, I truly do. But like I said, every person with autism is different when it comes to severity.

So, you don’t get the cure, that’s fine. But what about the kids like my brother? They do exist. My brother isn’t potty trained, he can’t speak, he’s self abusive, we’re currently struggling to find the right mixture of medications to give him in a very, very sad attempt to calm him down and make him less angry. My brother goes to an adult program with other men and women who are just like him. What about them? You don’t need a cure so they don’t need one either?

Yes, they need acceptance. Yes, they need compassion and understanding. But they also need a cure. If you don’t want it, that’s fine. You don’t have to take it if one ever came up. But if I had the chance to give my brother a better life, I’d do it in a heartbeat. His quality of life is so poor. He’ll never drive a car, have a career, fall in love, have children, nothing. If I had the opportunity to give him those things, I would. If that meant curing him, hell yeah I’d give that to him. And no one is allowed to tell me I’m ignorant for it.

So, there’s my answer. Yes, we need a cure for autism because not every autistic kid is high functioning. Some kids are severe like my brother and their quality of life will never be as good. Those kids need a cure, don’t they? A fighting chance? Hell, you might be in luck. I doubt we’ll see the cure for autism in our lifetime.

I don’t intend to offend anyone. I just think that it’s just not that simple. There are so many levels of severity and some kids are so severe that would it be fair to deprive them of a cure when it would certainly improve their quality of life?

What do you guys think?

My life as his sister: the early years

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I know what you’re gonna say. Most of the world says it. An autistic person’s perspective is more important than the sibling or parent. I get it. Unfortunately, my brother can’t talk so my perspective is as good as we’re gonna get. Besides, I think my perspective is important too.

My brother was born in July of 1992. Back then (according to my mom) people didn’t really know a lot about autism. My mom said when she thought of autism, she thought of Rain Man. But from the moment my brother was born, my mom knew something was off. He wasn’t developing as babies normally do. And yeah, every baby is different. But it was a noticeable difference.

My parents went to so many doctors trying to figure out what was going on with him. One doctor finally told them that my brother had autism. They gave my parents all the information they would need (which is A LOT by the way)

I don’t really remember when or if my parents actually explained to me what autism was or why my brother was different. In all honesty, he was never different to me. This was all I knew. This was what I was born into. I probably never even questioned it. But, when I was little, I used to suspect that my brother was faking it. Well, that was probably more what I hoped than what I believed. My brother is severely autistic. He can’t speak, he can’t even use a toilet. He’s basically a one year old in a twenty-four year old’s body…if that one year old was self abusive. He hits himself, he scratches himself, he opens up his forehead so he’s left bloody all the time. Sometimes, his meltdowns get so bad, the air is thick with the smell of his blood and he would get blood spatter on his walls and it dried under his fingernails.

Life when I was young was exhausting. And I don’t mean that my brother was a burden in any way because he wasn’t as severe as he is now. It was exhausting because it felt like my brother had such a small group backing him. It was just me, my parents, and my step-dad. It felt like the entire world shunned him and was disgusted by him and I felt like he needed to always be protected. We didn’t go to the same school when we were little but the kids at my school still made fun of him because of the few times they’d seen him. And I was furious. Every joke I took seriously, every insult I took to heart. My brother didn’t know he was being insulted so I took all the pain for him. And it’s a lot to take in sometimes. People used to avoid him like the plague. They’d see him rock back and forth and make his noises and people would swerve in such an obvious way to get away from him. And I took that all in.

Funny enough, my best friend of almost eleven years went to his elementary school. She didn’t remember him but still a small world though, right?

Despite all that, things were actually better for him. He was still so happy, so pure. It must’ve been nice to not give two shits about what people said about him or if people made fun of him. He was always smiling, always with his headphones in listening to his music. His favorite at the time was Witchfinder General (believe me, you’re not the only one who has no idea who that band is) which according to my dad was the only band that could ever calm my brother down.

There was such love in my brother’s eyes, the perfect combination of our mom’s green eyes and our dad’s brown eyes. They were so bright and wide and he had freckles across his nose. And sometimes it seemed like he was trying to understand. He looked at you like he was listening. He looked like a normal little boy. But those things are gone now.

The brightness in his eyes is gone. I rarely see my brother smile anymore. The freckles have faded and are replaced by scars, scratches, and open wounds. He’s so disconnected now, barely ever looking up from his CD player. It’s almost like he lost hope or he gave up. Or maybe it’s all his medication that he takes for his rage that by the way, doesn’t work. And why did I suddenly think of this? Why am I deciding to talk about my brother? I don’t know, maybe because it’s autism awareness day today and also autism awareness month. Or maybe it’s because his medication is working so badly right now that his meltdowns have been absolutely horrendous lately and it reminds me of when times were better. Regardless, I feel that my brother’s story should be heard, as well as every other kid like him. And since he can’t speak, I’m gonna have to tell it for him if you all don’t mind.