The Power of a Voice

Two months ago, I lost my voice. Not my literal voice that occurs when I use the breath from my lungs to rub my vocal chords together, but my metaphorical voice. My will, my motivation, my fight, my strength. This was the first time since the death of my aunt and uncle that I have felt nothing. Usually, I'm full of feelings, good and bad, 24/7. It's actually pretty annoying to constantly have a feeling and opinion about everything, but that's just who I am. When I don't have any feelings at all, I feel numb, frozen in time, just watching everybody's lives go on without me. For some people, this is an often occurrence. For me, this only happens when I am consumed with grief. Many times over the past few weeks, I opened up my blog and clicked the "new post" button, fully intending to write something, but the words just didn't come. They couldn't come. For me to put words on the page is for me to express my feelings, but how could I express something that I didn't have? I wasn't just a writer having writer's block, waiting for inspiration. I was waiting for God. During this time, I didn't even have the motivation to look up and see God. When He was right in front of me, I looked right through Him, and didn't see Him at all. When all His efforts to reach out to me through my eyes, my body, and my mind failed, He came to me elsewhere. He came to me through movies, music, TV shows, facebook, etc., even though most of it wasn't even about God. Most importantly, He came to me through other people: my family, friends, strangers on the street, and even animals! I physically left my Davis community, but I never really left. The community came home with me. I had constant updates on my friends' lives, and was always reminded that I was missed. I was not forgotten. My family extended me every ounce of patience and grace they had in their bodies as I laid on the couch waiting for the energy to do something, anything. It took time and perspective for me to see that God has never left my life, even though it seemed like He did for a while there.
So now we get to where I am now. I feel things now, I just don't know what exactly it is that I'm feeling. I can identify some of the thoughts that have been running through my mind, and I know how those individual thoughts make me feel, but I don't know how I feel overall. I am fed up with medicines and all the drama that goes along with them. I am determined to enjoy myself this summer, on my family trip to Australia and next quarter in Davis at my apartment, and to make up for lost time. I am desperate for a change in my pattern of having good months after the hospital, then crashing, going to the hospital again, having bad months, then having good months and starting all over again. I am disappointed for everything I missed out on, not only these past two months, but since my headaches started 3 years ago. I am empowered by my new lower pain level and my higher energy level. For the past two to three weeks, I have actually had the energy to do things! I've spent time with friends here in Modesto, visited my friends in Davis, gone to Starbucks, boba, shopping, etc. with my mom and sisters, been horseback riding with my dad... all with less pain than I have had in a long time. My pain has daily been at a 6 or a 7 out of 10 for a good amount of the day, which for me is acceptable. I've had moments where the pain has been even lower, but also moments where it has been higher. I've talked to my current doctor, changed my medications, seen a new doctor, and plan on seeing yet another specialist. Two weeks ago, I saw the UCSF neurosurgeon because of some new research I had found. When I had an MRI two years ago, I had a small cyst in my brain. I was told it was harmless and extremely common, which is true about 90% of the time. However, I found some studies that showed that cysts in the pineal region of your brain, which is where my cyst still is, can cause headaches if they are in the right spot, of a certain size, etc. So, I asked to see the neurosurgeon. Long story short, mine is probably still harmless. A small part of me wonders though, if I'm one of those few cases where "harmless" causes harm. Unfortunately, that's a story I don't have the answers to yet.
Based on the opinion of the neurosurgeon, my neurologist, my parents, and myself, I have a new treatment plan, one that uses DHE to prevent the high pain levels, not just treat them. I will schedule admissions to the hospital months in advance, and get the treatment no matter how I am feeling at that point in time. If I am feeling good, I will still be admitted, because the "feeling good" will not last on its own. I have given up the hope that it will last on its own. This is not something I have decided on easily, though. This is the grief I felt, that caused me to lose my voice. I was, and still am, grieving the hope that I held onto that one day soon I would be free of my daily pain. It sounds ominous and depressing to say it like this, but it turns out that holding onto that hope actually caused me more pain and suffering than letting it go has. I haven't given up hope that eventually I will be pain free, but I have realized that it's not going to happen anytime soon, and it certainly isn't going to happen without some serious treatment plans. So for now, I am scheduling DHE every 3-5 months. I plan to go back to the UCSF hospital for the DHE treatment in August, so that by September I will be able to go back to UC Davis, where I belong. I also hope to take my finals early for the fall quarter, and return again to the hospital in December, so that I can rest up for Winter and Spring quarters the next year. I hadn't thought this far in advance yet, but I will probably repeat this plan next year, possibly the year after that and the year after that. This is the plan that I will stick to until there is a drastic change in my daily well being. I hope that this plan will lead to steadily decreasing pain and increasing energy. I hope that eventually this will be a good thing, even though it doesn't feel like a good thing. Through all that has happened and that will happen, I feel trapped. I feel trapped in my own body, in a life that I would never have imagined for myself, but instead of cowering, I am pushing the boundaries. I am still going after my dreams, doing my best to stay on God's plan for my life, and I am constantly thanking Him for the blessings I DO have.
I have learned many things about life in the past few years, but the most important lesson I have learned, and probably will ever learn, is this: God is ALWAYS with you. No matter your background, environment, personal feelings, beliefs, trials, or blessings, He is right there with you. He is by your side, whether you see Him or not. He is speaking in your ear whether you hear Him or not. He is embracing you whether you feel Him or not. He has infinite love for you, and He will NEVER give up on you, so don't give up on Him. Don't give up on yourself. It's okay to drag your feet from time to time, but don't permanently give in to the world, because the world is not your permanent home. God is your permanent home.
"May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had, so that with one mind and one voice you may glorify the God and Father of our Lord Jesus Christ."
Romans 15:5-6
Love always,
Sierra

So Now What?

Sorry for the long time between my last somewhat disturbing post and this one, but I needed some time to process the results of the doctor appointment. To make a long story short, it has been confirmed that the six day hospital treatment did not work this time. I say this time because seven months ago, it did work, and my doctor said that there's a possibility that if I tried it again sometime in the future, it would work. I am definitely not planning on getting the treatment anytime soon, so that left me wondering what comes next. When I asked my doctor this, I expected another drastic treatment to become part of the discussion, but instead, she prescribed me a new daily medicine. I have tried lots of different kinds of daily medicines, and so far none of them has made a significant difference in my daily pain level. So, when this was the only suggestion, I was and still am a little disappointed. Even though realistically, I know that there is no "cure-all" treatment or medicine, but a small part of me was still hoping for one on the eve of the appointment. Since this disappointment was the only feeling I felt immediately after the appointment, I cried for a good part of the drive home. Remember how I was talking about stages of grief? Well, I felt grief after the appointment, and I have been dealing with it in some mini-stages of my own. The first one, the feeling of intense disappointment, anger, and helplessness, lasted for about two days after the appointment. The first stage of my grief was gone when I woke up on Sunday morning. I woke raring to go, determined to have a good day: I made breakfast with my mom, cleaned my room, went out to lunch with a good friend, and spent some quality time with my family. This burned me out, so I spent the rest of the day relaxing. On Monday, yesterday, I woke lethargic and sore, with not a lot of emotional energy. My "migraine-brain" immediately expected to feel this way for a couple days, and on I went to the next stage of my grieving: the pain of the loss of the future I expected. Luckily, this only lasted for a day. I don't know how or why it only lasted a day, but I am grateful, because the only feeling I had during the next stage was depression. I won't go into the details, and it wasn't extreme depression like you should be concerned for my well-being, but the temporary depression that everybody feels when grieving the loss of something or someone important. So that brings us to today, Tuesday. I had a counseling appointment today, and God prepared me for it. This morning I woke up refreshed. I did not wake up with less pain than yesterday, but with a different mindset. Instead of seeing the future I lost, I saw the reality. I am going to be stuck with this migraine that I have right now for the near to possibly distant future. I woke up ready to strategize, plan out a realistic future for my college time. I am planning on meeting with the student disabilities center and the Dean's Office at UC Davis next week to discuss the details about my accommodations, considering changing my schedule, and actively thinking about other ways to make me successful at Davis. By "successful," I don't necessarily mean "get straight A's," but I want to have the ability to do the best that I can and prevent any hindrances that could possibly stop me from being successful. (If I do get straight A's, that would be awesome though.) Right now, I am in a stage of acceptance and transformation. I am accepting the fact that my pain level might not get better for college. I am changing the mindset I had for college and everything that goes with it. I am communicating as best as I can with my family, friends, and health advisors. I am working to build a good future for myself. However, I am not doing any of this alone. God is with me. God is on my side. God is holding me up. God is guiding me. God loves me.
I mentioned in my last post that I did not feel God with me, and I am ecstatic to say that that feeling did not last. The first time I felt God again was with my friend on Sunday. Since I am not a normal teenager, I cannot be a normal friend to all the friends who are great friends to me, and I often feel guilty about that. I also feel left out when I can't go to a hang out, whether I'm invited or not or a trip to the beach versus to the ice cream shop. My friend Shannon and I had planned to hang out earlier last week, and twice we had to reschedule, ending up having lunch on Sunday together. I felt guilty about rescheduling and not being a good friend, but being with Shannon, that guilt fell away. Shannon has this innate ability to light up my perspective just in a two hour lunch "date." I have been friends with her for practically my whole life, and she and I are very alike. We go to the same church, have similar family situations, and have similar views and beliefs about school, relationships, faith, and life in general. My point about all of this is that God shined His light through Shannon on Sunday. He was able to speak to me through her in a time when I did not even expect it. Now, looking back, I can see that God was pushing me towards spending time with Shannon, and outside forces were resisting. Not only was I reminded in the moment with Shannon that God loves me, but I was reminded that even though I could not feel Him before, He really was with me. I strayed away from his path, but I could never stray away from his presence. I encourage you to try to stop and look at your life and look for moments and situations like mine. Moments when it would be easier to stay in your safe bubble, but you have the opportunity to change it. Don't choose the easy path. Even if you can only try, just try. Make the effort when I didn't. I could have saved myself days of emotional pain had I spent some of my time and energy with Shannon sooner.
Now, I have a message for you all. It took me a while to listen to it, and I probably will have to hear it again, but here is a reminder for you. God is with you. God is on your side. God is holding you up. God is guiding you. God loves you. GOD LOVES US. I could write that 1,000,000,000,000,000 times and still not accurately express just how much God loves us all. I'm going to do my best not to ever forget that, and I hope you can too.

"No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor demons, nor things present nor the future, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."

Romans 8:37-39

Love always,
Sierra

Disney One-Liners

I decided to make this post a little different than my others. Instead of bible verses, I will be using Disney quotes. Wisdom and inspiration can come from the most random things in life, and for me, Disney is a bright example of that.
"The past can hurt, but the way I see it, you can either run from it or learn from it." -Rafiki
Yesterday, I saw my counselor (we'll call her Si) for the first time since the hospital. That woman and I are like the same person in different bodies. She is a nerd, talks a lot, and is passionate about her work... Sound like anyone we know? Well, a few months ago, Si found a good way of categorizing the emotional side effects of having chronic migraines. My migraine causes me grief. Not grief like troubles, but grief like the feeling you have when a loved one dies. My old self died when my migraine started. Typically, there are stages of grief, and healthy grieving is moving slowly but steadily onward through these stages. I will use Elizabeth Ross's "stages" of grief:
1. denial
2. anger
3. bargaining
4. depression
5. acceptance
When dealing with a loss of a person, a job, a pet, etc., healthy grieving is going through the stages one by one, only moving forward. With my grief, I have gone through each stage multiple times, which would be considered unhealthy if I was grieving like most people. Grief typically describes the feeling that you get as a result of one singular event. If you look at the past two years and next few years to come as a singular event, then I should go through the stages of grief when my daily migraine ends. This seems logical, right?... Well it also brings up the question of how I should be feeling in the five years the broadly singular event is occurring. I've decided that nothing about my situation can be considered normal. I cannot live like a normal person. I cannot be a normal person, so why do I feel the need to grieve like a normal person? Probably because it is just human nature, but that still doesn't help me know how to grieve in a healthy way. I guess I should say why I need to grieve healthily, huh? Well the way I see it is every day I have a giant unhealthy problem in my life, so being unhealthy in any other area of my life would just make life all the more difficult. You may also be wondering why I am sharing this with all of you, how this could relate to your life. All too often, people try to put themselves in the same category as others because nobody likes to be alone, particularly in tough situations. Even though you may not have migraines, physical pain, or pain every day, you do not have to grieve like everybody else. However, if you have suffered a singular loss, do try to stay in the norm, for your own sake.
"I never look back, darling. It distracts from the now." -Edna Mode
Just like Rafiki, Edna understands the importance of living in the present. Sometimes, I do not want to live in the present, because in the present moment, I am in a lot of pain. I try to distract myself, usually by watching tv, talking with friends and family, or listening to music. These distractions help me continue living in the present. When I am not easily distracted because of the higher level of pain, I tend to live in the past. I think of where I could be if I hadn't gotten migraines and start wishing my life was different. Wishing your life was different does not actually change anything... In fact, it makes the present moment worse. When this happens, and I head even further down the downwards spiral, I move to the depression stage. I am constantly moving between the stages of grief, and living in the past pushes me in a negative direction. For me, healthy grieving is steadily moving through the stages, but I do not always have to move from 1 to 5 to be in a healthy place. Any of you dealing with daily pain of some sort are in the same boat as me. Don't feel the need to be like everybody else and make it to the acceptance stage as quickly as possible. For those of you with lifelong issues like migraines, the acceptance stage is neverending. You will never fully move past your pain, because it is part of your daily life, whether you actually feel the pain daily or not. Having a lifelong problem is scary. There will be times when you think you cannot make it any further in your journey. That, you are just going to have to accept. You will not always be happy, but then again, nobody is happy 100% of the time. Honestly, you might never be happy even 50% of the time, but it does not matter how often or how long you are happy. Only the quality of your happiness is important.
"Remember you're the one who can fill the world with sunshine." -Snow White
I have faith in you. You are strong enough to make it through your life just the way it is. This is a fact. God does not give you things you cannot handle, but you must choose to fight. You are strong enough, but I could never convince you of that. You have to convince yourself that you are strong enough to make it through every single moment of your life. Never forget that you are never alone.
"Promise me you'll always remember you're braver than you believe, stronger than you seem, and smarter than you think." -Winnie the Pooh
Love always,
Sierra

The Emotional Side of Things

So far I have only talked about the physical grievances that I have gone through recently. I have not mentioned the emotional trauma, besides my uncle’s death, I have been through as well. Living with pain is something everybody does, the only difference is how severe it is. One pain is not worse than the other, except the grief of losing a loved one. Losing someone you love is the worst kind of pain. Physical pain can be cured and treated, but there is no medicine for emotional pain. Sophomore year is when my pain started.
The summer before that school year, my aunt suddenly died at the age of 39. I had never lost anyone close to me until then. I had no idea that I would end up losing another loved one within six months. In a previous entry, I mentioned my uncle’s death from cancer. My aunt died July 26, 2012 and my uncle died December 13, 2012. It was common belief that the world was going to end in 2012. Well, for my family, the world did end. My mom is now an only child, and both my aunt’s and uncle’s sons are left with only one parent. 
I don’t know why God decided that my uncle and aunt could die. But I don’t think that he chose to kill them. I was angry with God for taking them from us. In a similar way, I was angry at God for giving me migraines. But lately I have realized that everything good in the world comes from God, and everything bad comes from satan. God sees the future and makes a plan for our lives, but leaves the execution of the plan to us, which is otherwise known as free will. God saw that my uncle and aunt would die and he brought each of them a son into this world. Every time I see those boys I see the beauty of God’s grace. Both my uncle and aunt had been trying and failing to have kids for a long time, so it was truly a blessing for those boys to be born. 
My advice for others who are angry at God is to first, get your anger out. Yell, scream, cry, or just sit in silence. Feelings are meant to be expressed. The feelings that get pent up inside for too long will eventually explode. Once you have the weight of the anger off your chest, look for the small beautiful things God gives after satan takes. Look for the miracle children, the newfound strength, and most of all, forgive. Since God can forgive us for all of our sins, He deserves our forgiveness. 
“You do not stay angry forever but delight to show mercy. You will again have compassion on us; you will tread our sins underfoot and hurl our iniquities into the depths of the sea.” Micah 7:18-19
Love always,
Sierra