Sleep...

I'm just not going to try to have a normal sleep schedule anymore.

I'm not too stressed, because literally all I'm dealing with is being flat broke, having a freakishly messed up body, and my wonderful marriage. I have no job, no school, and no donating anything. While I'm still rather stressed, it's not to the point where it would mess with my sleep (ie: nightmares about work, not getting REM sleep from worry about not getting up in time for work, not being stressed from interaction).

Anyway, it's been very bad lately: sleep at 8:30am or so, wake up around 4pm or 5pm. Well, today I went to sleep at around 8:30am and woke up 12 hours later. Ugh.

Hate It!

• I really hate pressure. It's why I would never be a salesperson and why I hate salespeople. I don't like people trying to force me to do anything, let alone to be one way with my womanhood over another - if I want babies, I'll have babies. If I want a career, I'll get a career. If I want both, I'll do both. It's none of your business and HUSH!

• I really hate lack of upfrontness. It's a word now. I can't even begin to handle it when people lie to your face. I hate it when they talk about you behind your back. I hate when they make assumptions when they could just as easily ask you about their concerns. I hate it when they say something is okay to your face and get angry about it, often holding onto it like a grudge. I hate asking upfront questions and getting vague, lame answers.

• I hate when people put cold drinks next to hot food. Do you know how physics work?

• I can't stand it when people think young people "think they know everything", especially when it's "because I did the same thing." Excuse me? Am I you? When have I claimed to know everything? Get out.

• Prideful piety. Oh, give it a break. 

• I hate when people are not aware of other people's feelings.

• Hypocrites. STOP it. Just stop. Don't be sleeping around and go to church pretending that you're white as snow. Don't watch gay porn and hate on homosexuals. Don't go around thinking you're better than everyone else.

• I hate it when people drive slowly because I have intense road rage.

• I hate it when people are shallow. Don't be that way.

Well, those are all the annoyances I can think of for now. May I become more patient and forgiving.

Saying Goodbye.

Well, not many people read this blog, so I feel safe mourning my loss here. I can't tell anyone else just yet because I know they'll be upset, but today I said my final goodbye to one of my dearest friends.

You brightened many dark days. You helped me have a memorable middle school and high school experience. You brought such dynamic and meaningful moments into my life and you frequently healed my dying soul. You gave me confidence when everything else was tearing me down. You made me feel true joy and, at times, frustration. I was not always nice to you, and I'm sorry for the scars, but you were always there for me. You will remain in my heart. I hope you are now bringing such experiences to others who can appreciate them. I am excited to learn of your fate and future triumphs. You'll go far, I know it.

My First Viola
2008 - 2013

"If music be the food of love, play on." - William Shakespeare 

Rough Night

I had a difficult time last night. I kept my husband up way too late crying to him - which happens a lot, unfortunately. I feel bad when this happens, but when I'm upset, I can't put other peoples' needs before my own. And, when I get upset, I get really upset.

You know (and I'm sorry for going on and on about it, but), the worst parts of PKD is not the kidney pain. At least not yet. Right now, it's just knowing why body functions don't work. Knowing they may never work. I feel like I'm missing out on the human experience. I'm scared to ruin what function I have.

My husband reminded me of a time where I was taking benzodiazepines just to function around people. I was on them when we went on our first date in February 2012. He said that he remembers my brain turning into mush. And he's right. I hadn't recognized it when I first started taking them, but my cognition, reaction time, everything just started to slow down.

While that made me sad, it also made me remember how happy I am to have Stephen in my life. Without him, I'd probably still be on those things. He just makes me feel strong and comfortable. He helps me through my hopeless moments. He is still affectionate toward me, even when I'm saying all those things you say when nothing is going right. He is wonderful.

Selfish?

I've had a lot of time lately to think about things. 

I'm not sure how to feel about anything anymore. My perspective is still eternal, so that's good, but maybe especially given that line of thinking, life seems pretty pointless. In a way. It's difficult to explain, but I'll try. I think I'm lucky that I won't be here too long. Perhaps that's why my trials are so frequent and some of them severe. I won't suffer for long. 

Then again, it's scary and sad. I feel so badly for my husband sometimes. He really had no idea what he was getting into when he married me. I feel bad that he will probably be lonely for years. I feel bad for our prospective child(ren). How could I bring them into this world knowing 1) what it will become 2) that I could give them two genetic disorders that compound each other and 3) that I won't always be here for them.

It's scary because of all the blood, heart, and brain things. I was okay with dying of renal failure because they say that's a good way to go. The timing is estimated to be pretty good (51 - 69 years old). Yet, I've learned recently that 50% of PKD patients die of heart problems stemming from PKD, rather than renal failure itself. Add all the craziness that Factor 5 Leiden brings (stroke and blood clots) and I'm starting to realize my life could be shorter than I first expected. 

50 - 60% chance of dying from renal failure and a 50% chance of dying from heart problems. There is a small chance of dying from an aneurysm. Those are from PKD alone. I can't find anything about Factor 5 Leiden w/PKD except that it makes transplants especially dangerous and prone to fail. 

So, while it sucks for me quite a bit as far as planning anything, I feel worse off for any kids we could possibly have. They each (we plan to have 2 tops) have a 50% chance of getting PKD and a 25% of getting F5L. I just sometimes feel bad that I'm even considering having them. 

Then I think of all the criticism I'd get if I didn't have kids - being part of a church such as mine. Women's soul purpose, many think, is to be stay-at-home mothers. If I can't have kids, why don't I adopt? Who says I can't have kids? Just try anyway!

Then sometimes I think: If that was God's intention for me (and other women with these kinds of pregnancy obstacles), why did he make it so hard for me to have a child? Why would he force me to put my life in danger to have a baby? 

I don't know. I still want one, but I realize at this point it is for purely selfish reasons. Yet, it makes me wonder what my blessing was talking about. I wonder if my understanding of motherhood would come from this life or the next. Who knows? 

A Different Standard of Happiness

I am so happy right now. Again, I've no idea how to begin what I want to say, so I'll just jump in: a lot of things disappoint me/have disappointed me in this life. I'm not sure if that's because of my idealism, my pessimism, or if those things are just plain disappointing in and of themselves.

However, after reading my blessing, I've just been happier. Much happier. I really enjoy knowing that I have someone looking out for me, who loves me unconditionally, and who is constantly cheering me on. Sometimes I feel so alone. Not lonely, but just like my ideas and personality just don't fit in anywhere. My physical circumstances and mental challenges just exacerbate the problem, and I just feel out of place all the time.

Yet, I have a purpose to someone. And I know that others also have a purpose to this someone. That really helps me to view people in a different, better light. It's easier to forgive others because I understand that I can never truly understand where they've been or what God has in store for the rest of their lives. I can be more patient with them and with myself. 

The ideas or behavior you dislike about someone, they don't really matter. What people dislike about you doesn't matter, because you matter to someone greater. They matter to someone greater. We have our flaws - some flaws which can be very hurtful - because we're human. It wasn't inherent in ourselves, it's part of being a human. We have to learn to push our true selves through the downfalls of our humanity and some just have a more difficult time with it than others. My true self isn't depressed, wrathful, anxious, or vindictive. Those are just my human flaws. 

Anyway, my point is that I have gained this strange sense of love for others and for myself. You may even call it hope. Real hope. Or an eternal perspective. It's strange, but I love it.

Patriarchal Blessing

There are some other parts of my blessing that I really enjoy, so I want to share them! I know some people look down on this, but I have always wanted to share my personal scripture with everyone. I can't tell you how much this has helped me in my short life. I hope it can help you too or at least inspire you to get one for yourself.

"Vanessa, it is evident that Heavenly Father loves you dearly. And you are, indeed, a choice and favored daughter of His. He knew you in the life before; He recognized you as one with steadfastness to the Gospel and purity of heart. And capable of making proper decisions, for you chose to follow the Savior, Jesus Christ." - You can see why I'd love this, right? I'm truly honored to know that He adores me so much and that He actually knew me. Wow.

"...you will obtain eternal salvation and exaltation in the kingdom of our Heavenly Father. You will be a choice daughter in His kingdom; one who will know of the privilege of motherhood, and you will have the opportunity to know the joys as well as the disappointments of motherhood. I bless you that you will receive the ordinances of the temple, that you will be able to be fully endowed, that you will be able to receive all of the blessings of the Holy House of the Lord." - This is especially important to know now as I'm trying to make decisions for my life. It might help people to stop bothering me about things but, more importantly, it helps me know what is in store and that, if I put forth some effort, my work will pay off. I'm extremely glad that I can have the hope of attaining such a goal.

"You have a wonderful countenance, a joyful personality, and a winning smile that will someday win the heart of a young man." - Stephen was very young and I did have to win over his heart. Totally happened.

"...you will be blessed to take the Gospel to others. I bless that you will have the capacity to do so. As you share the feelings of your heart concerning the Gospel, you will be influential in bringing others to the Gospel." 

"You will be able to work with young women; you will be able to share of your talents, and you will find joy and happiness. Immerse yourself in the service of others, for therein is the joy; if you are in the service of your fellowman, you are in the service of God." - Very true. Not a lot of things make me truly happy, but the idea of service has always brought joy. And I'm excited to work with young women, that will be awesome!

Trials

I may complain a lot of the time about my problems, but I know I'll get through them. I go through trials because I need to. It says I will go through many trials in my patriarchal blessing; one of the things that binds my faith to the Gospel. "I bless you with the patience and the understanding that trials are for your good, and that as you remain true and faithful, the trials will be for your benefit." Later, "Father has an additional caution and that is that I should bless you with the principle of patience -- that as you recognize that Father will bless you according to your needs, it will be in His time and of His season."

Those are the only two cautions/warnings in my 1 3/4 page blessing.

Luckily, there are many blessings included to help me with said trials. "I bless you that angels will be about you. As you go about your activities, angels will guide and direct you and give you direction to your life. You should call upon Father daily; cry unto Him for your sorrows, and He will be certain that His son, Jesus Christ, will be at your side. His atonement is for you, and the blessings of the atonement will be yours. You are promised that through His atonement you will not be alone in the trials of your heart, trials of your circumstances, and trials of your faith. The Savior will be at your side through all trials. That is promised with assurance."

So, I just need to be patient, not angry or upset. I should obviously pray more. I'm really grateful that I have something like this in my life. It has given me plenty of direction and will continue to do so, I'm sure.

Mother-in-law

One of the neatest things about getting married is having a whole new family to figure out and adapt to. So far I love my new family members. My dad, my brother, my half-siblings, some aunts, some uncles, my grandparents, cousins, etc.

Yet, there are some I don't love so much for varying reasons. There is an aunt I already don't get along with because she decided to chew my husband out on our wedding day. It was for something absent-minded of him, but they should all know by now that he is extraordinarily absent-minded. *She could have brought her complaints to me, but whatever.

So I don't get along with her much and I don't particularly care, but there is someone else I don't get along with well and it's something I care a good deal about.

My mother-in-law.

I never wanted to be one of those women who always complains about her mother-in-law. I always thought the comparisons and shaming were stupid. And they are. I don't do those. We just don't get along well at all. And I complain about that a lot. At least to myself.

There are many reasons for this. Mostly I think it's just because we're incredibly different. She is great at math, sewing, crafts, and knitting. She's a movie and literature buff. I am none of those. I am too picky about my books and movies and I suck at math and crafts. She doesn't like to cook, she doesn't play any instruments, and I've not heard of any sport she could be interested in. I don't think she likes geology or forensic science and I don't think she's particularly interested in the field of health or criminal justice. She also doesn't like pets, but she likes babies. *Sigh*

So...we're basically opposites. Also, she intimidates me a lot. I don't know if that's because she's not open about things or if I'm just still not over my initial fear of her. Maybe I'm just scared to talk too much since we have virtually nothing in common and we don't think similarly at all. I don't want her to hate me, so I keep quiet but, in doing so, maybe I am making her hate me because I seem boring.

I feel like I just need to stop wanting a good relationship. If it happens, it will happen, but I should stop letting it bug me and just realize that it's not as important as I make it out to be. It would be nice and convenient, but that wouldn't be life, would it?

Genes and Baby Talk

I vote that I have the worst genes in the family. Obviously, there's the PKD thing (which is a sporatic mutation) and I am heterozygous for Factor V Leiden (which I inherited). And I'm only now learning that these are really no good together.

I'm currently reading about women with Factor V Leiden and they. have. miscarriages. Some of them have had five or more. It's really scary. I have noted that having this worsens the pregnancy toll on my kidneys. I am at an even higher risk for pre-eclampsia, which is deadly, folks.

It's a little unnerving for me. Luckily, there is a thing called Lovenox you can take during your pregnancy (a lot of women swear by it), but I'm not sure it would be safe for use since it says: tell your doctor if you have kidney disease. But other women are saying that, even when they did use it, they developed clots and miscarried or delivered early.

Maybe it's a wonderful thing that I grew up not wanting kids, because it looks like there is a chance I may not have any. Babies aren't completely off the table, but I need to ask a lot of questions. Right now, it looks okay as the pre-eclampsia risk from the PKD only happens after high blood pressure is developed (which it's not right now). I can deal with the FVL things if they even happen.

Transplantation

Maybe it's because I've had a lot of extra time on my hands, but I've been looking into PKD stuff lately. It's really lame, but I like to be informed. Now, there is a 50/50 chance that a person with PKD will progress to end stage renal failure and need a transplant or dialysis. So I've been looking into what I would want if I happened to be one of those unfortunate 50%.

You have to know that there are different gene mutations that cause PKD. The most common is the PKD1 gene mutation. Someone with this mutation has the shortest life expectancy of approximately 53 years old.

In this case, I would want dialysis. If we can afford it and I am not suffering too much, I would probably do it. Maybe I would have kids by then, and I'd definitely miss Stephen, so I'd want to stay with them as long as possible. Obviously I'd want to stop sometime, and that would be 60, I imagine.

There is another mutation, PKD2, that is much rarer, but has a higher life expectancy of 69.1 years old. If this is the case, I would most likely end it there. 69 years old is a long life, if you ask me!

Most importantly, as things stand now, I would not want a transplant. No matter what age. Members of my family have already volunteered to give me a kidney, which I love and am grateful for, but I would not want one. I don't know how to tell them this, because I don't think they'd understand.

As they see it, a transplant is the best option. New kidney, everything goes back to normal, and life goes on. However, that's just not how it is. All the heart problems will remain. If I don't get a live transplant, those suckers stay in and the pain they cause would continue.

But that's not even the worst of it. I'd have to take up to 30 pills a day just to keep the new kidney from being rejected. I know I'm going to forget one of those. No one tells you these pills DOUBLE your risk for 32 types of cancer. They cause you to gain weight in weird places, high blood pressure and cholesterol, DIABETES, cushing's disease, facial hair growth, paper-thin skin, bruising, hair loss, and they increase your risk for all kinds of infections because these drugs are suppressing your immune system.

I realize they are working on things to help with transplantation and they're working on one drug right now to slow the progression of PKD, but if there are no changes to the way things are done, this is how I'd want it.

Want to see something gross?
http://www.nejm.org/doi/full/10.1056/NEJMicm0905399

EDIT: Well, I seem to not be a perfect candidate for transplant anyway, due to my heterozygosity for Factor V Leiden. http://www.ncbi.nlm.nih.gov/pubmed/11502996

I'm not shy.

I've been complaining a lot. I don't know what it is, but lately I've been feeling much more deflated and meaningless than usual. Maybe pre-winter blues? 

Anyway, while I'm on this train, I may as well enjoy the ride. I sometimes wonder what I would be like without my anxiety. I wonder how much fuller and meaningful my life would be without having these psychological setbacks. It has gotten a bit better with some practice, but even after a few hours of social stimulation with friends, I get exhausted. 

People always think I'm so shy and, by extension, secretive, but I'm not! I think privacy is overrated. I love having people around me know everything about me and I like knowing as much as I can about them. I guess it's just a trust/honesty thing? I like to think that I am honest. Honesty is truly the best policy.

Anyway, no matter the reason, I am not shy. I am just...scared. I would say scared. With hesitancy. I'm not quite sure what it is, but I get dizzy and heart-racy when I know people are talking to me or even looking at me. I can't control it. It's not like I'm afraid I'll get hurt or anything...it just happens. Maybe it's because people expect things from me? They expect a normal conversation complete with rules about what to ask and what not to ask and how to say what and when to smile. Social rules?

Especially babies. I don't like smiling at babies for no reason. It's weird. Why do we smile at babies? I get smiling at your own baby, but someone else's? Even when it's not being cute or funny? 

Tangent, but I don't get that. There is only one person I feel like I can share absolutely everything with and be completely myself with and that is Stephen. On the other hand, there are people who make me especially nervous. I don't know why it's like that. 

Way back to the point of the post: I just wonder what it would be like to not be like this. I hate this aspect of me. If I am shy, I want it to be voluntary. But I want to be outgoing. I think I'd be a really cool person if I was outgoing.