Cope Ahead

So here I am again, at UCSF hospital getting DHE for the fourth time. The doctors know me, and I know the drill. I keep thinking that it will get a little easier every time I come here, but it's just gotten harder. I think it's because I always walk in the doors hopeful that it will be the last time I ever have to go through it again. This time is different, though. This time I know it won't be my last admission for DHE. I know this is not my "cure-all." It is just what lets me live my life the way I want to. If it wasn't for this, I would stay home and go to MJC, if any school at all, possibly taking one or two classes per semester. I would have higher pain levels, less energy, and effectually, less motivation. Because I am spending this week in the hospital, I will not only be able to make it to Davis, but I will be able to enjoy myself while I'm there too. Part of our new treatment plan is "coping ahead" by planning DHE treatments ahead of time, instead of after I start to worsen, so we are already preparing for another admission in December. I am praying that this plan helps me finish out a whole year of college strong and proud.
For most of July, I was in Australia and New Zealand. I know right?! AMAZING opportunity! My grandparents took my mom, dad, sisters, and myself on the trip, and we had a blast! I felt so blessed to be there. When you think about it, traveling is not the easiest thing for a person with a chronic illness to do. Often times, it seems impossible. When I was on the trip, my experience was impaired slightly, but it was also enhanced for the same reasons. Of the 21 days that we were gone, I only missed 3 of them because of my migraines. I also missed a few excursions here and there, but nothing major. I experienced the best parts of the trip right along with everyone else, which was a big deal for me. Here are some photos of my favorite moments:

Yes, I got to hold a koala AND feed kangaroos and wallabies!!! Told ya, an AMAZING experience. However, my intention is not to brag about this spectacular trip, but to prove that people with chronic illnesses can have some fun just like others! Of course, every illness has its own set of limitations, but with some ingenuity, perseverance, courage, and motivation, anything is possible! And the only reason why anything is possible is because of God. I am so grateful to God for giving me this trip. It was something to look forward to, an awesome experience to distract from an otherwise uneventful and painful 6 months, and stockpiles of memories for days like today, when the life I imagine for myself seems impossible. You, too can accomplish a better life for yourself. No matter your struggles, obstacles, or fears, God will be there with you every step of the way.
"And my God will meet all your needs according to the riches of his glory in Christ Jesus."
Philippians 4:19
Love always,
Sierra

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

The Road to Recovery

First of all, thank you to each and every one of you who thought of me, prayed for me, contacted me, sent me words of wisdom, or just sent your love my way while I was in the hospital or this past week while I've been recovering. It means so much to me that so many of you are praying and caring about me...
Sometimes I wonder if I'm imagining the pain, or at least the intensity of it. I've found that these moments occur when the pain is less. I think there's something wrong with that process though. The minute my pain decreases, I doubt myself instead of enjoying the time. I start wondering when the pain will return and what I could possibly do to stop it. Sometimes I even wonder if the moment will last forever, and the pain will be permanently subsided. Now if these moments of daydreaming only happened once every few times the pain lessened, that would be okay. But I go through this thinking process every single time. I wonder if me living life carefree for a short period of time will cause others to wonder if I'm faking it too. But why does it matter what they think? Why do I need people to believe the pain I'm in? I've gotten past the point in my life where I need others' approval to behave a certain way or do what I want to, so why should my migraines change that about me? Why should I let them change my personality in a negative way when they already have control of my entire body? Your personality-your mind, thoughts, actions, behaviors, and choices-is the one thing that you have complete control over. You can choose who you want to be. Nothing can change that, not bullies, financial situations, your significant other, or even an all consuming disease. Nothing can change who you are unless you let it.
This is something I'm struggling with this week. In this case, I mean struggling as in actively fighting the urge to give in to the pain and exhaustion from being in the hospital. I haven't posted with an update as to my condition since I was in the hospital because I am still not sure how I feel about needing to accept my condition and what it has done to my life. I've been struggling with a high pain level in the afternoons to evenings, a little nausea here and there, and a very weak body. At first, I could barely brush my hair without my arms being sore afterwards, but now I'm working up to bigger things like doing my laundry or baking for fun. I've even been able to pleasure read a little bit! Luckily, so far I am succeeding in staying positive and keeping myself distracted when necessary. Actually I'm keeping myself distracted 24/7. I'm not sure if this is good for me or not, but it is how I am coping right now. When a situation is fixed and out of your control, it is useless to try to change the outside factors. At that point, the only leeway you have is within yourself. You can only control how you choose to react to the situation. In my case, I've chosen to accept that I am recovering from being in the hospital and that I will have no control over how fast I recover or even how far my recovery takes me, so my job is to keep my mental state content. This week, I have had little strength to work with, and it is gone by 2 PM. At 2:00, I am stuck on the couch for the rest of the day. So, I do as much as I reasonably can before 2:00. I have a nice breakfast, take a shower, get dressed and ready for the day, then I have a project or two to do for the day. Usually, I clean up the kitchen and then work on unpacking my college belongings. This gives me a sense of accomplishment for the day, no matter how small, so that at 8 PM, when I'm ready for bed, I don't feel like I wasted the entire day on the couch binge watching Gossip Girl and Supernatural.
When you are dealing with an impossible situation, it is important to take time and take care of your well being. Being proud of your accomplishments of the day, no matter how big or small, can be the difference between a good day and a bad one. We have to learn how to work with what we're given instead of waiting for more to appear.
"That's why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong."
2 Corinthians 12:10
Love always,
Sierra
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A New Beginning

It's cheesy, I know, but I'm really starting to get the feeling that these next six months are going to be a new beginning for me. I think it starts now, with my acceptance of everything in my life as it currently is, good and bad. I'm still working on it, but I need to accept that I have done everything in my power to get better, and I will continue doing this. I need to learn how to put my own ambitions aside and follow God's plan for me, even if I can't see it all yet. I need to understand that I will never fully understand the reasons why my life is as it is, because I am not God. I am human, an imperfection. I need to stop striving for perfection because I will never reach it. All of these selfish ambitions and prideful actions will only lead me further from God, no matter how good my intentions are. I have every intention of actively following God and His plan, but oftentimes I find myself far from God's direction, and I realize that yet again, I have ignored His help and proceeded forward on my own. The times when I come to this realization are times like right now, when I am lying completely defenseless and broken in spirit and body. I am afraid. I am scared that in these next few weeks when I'm recovering I will forget about God and internalize all of my feelings, and end up in depression. Usually when I am recovering, I have some sort of goal or thing I am striving for, like going back to school or getting ready for college. I don't know how to handle the open-ended question that lies ahead of me. I don't have school again until September, and I don't have a job. I can't even think of a hobby that I want to get back to.
Here I am again, talking about my goals and my aspirations when I should be focusing on the here and now, resting and healing, listening to God's voice to see where He guides me. This is something each and every one of us does way too often, worry about the future. Worrying gets you nowhere. It leaves you anxious, fearful, quick to judge, and vulnerable to worldly forces. Of course, it is impossible to just stop worrying altogether, because again, we are human, imperfections. We are going to worry now and then, and that's okay. God doesn't expect us to be perfect. He just expects us to try our best, which includes learning when it is appropriate to worry and when it is time to give it up to God. Now unfortunately, there is no "magic moment" where you hear God's voice booming from the heavens reminding you that your suffering is not in vain. (I kinda wish there was though, it would make our jobs much easier.) I know a little bit about suffering, but Jesus knows everything about suffering. Jesus made the ultimate sacrifice, one that we just celebrated yesterday. This year, Easter reminded me that God and Jesus understand and empathize with suffering, so He would not let us suffer if it wasn't absolutely necessary for our souls. Again, this is difficult to understand, but it falls under the category of faith. Faith is believing in something without proof, knowledge, or full understanding of it. That's the beauty of faith.
I was admitted into the hospital today. So far I have gotten one dose of DHE through an IV, and I will get a second one hopefully within the hour. I haven't started to feel the side effects yet, so I'm mostly just tired. I want to take a moment to thank each and every one of you that reads my blog, sends me positive notes of encouragement, and/or prays for me. My heart has swelled in the past few days with the realization that I have an army praying for me and supporting me. I am truly not alone in this fight. I have my friends, family, strangers, and most of all, God. If you do or don't have an army or even one person praying for you and caring about you as you are suffering, I would like to pray for you and support you as you do for me.
"Many are saying of me, 'God will not deliver him.' But you, Lord, are a shield around me, my glory, the One who lifts my head high. I call out to the Lord, and he answers me from his holy mountain. I lie down and sleep; I wake again, because the Lord sustains me. I will not fear though tens of thousands assail me on every side."
Psalm 3:2-6
Love always,
Sierra
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Disappointment

Of all the emotions you can feel, I think I hate disappointment the most. I don't know if this is a universal thing or just a me thing, but I really can't stand disappointment. It doesn't matter if it's me feeling the disappointment or someone I love feeling it. It just all around sucks. I've been feeling a lot of disappointment for the past couple months. No matter what I do, it never seems to make a difference. I try my best and work as hard as I can, and yet still I end up feeling disappointed. I'm not disappointed in myself, because I have done every single thing to the best of my abilities, but I am disappointed in the situation surrounding me.
This past quarter, Winter Quarter, at UC Davis has been one of the hardest time periods of my life. In case you didn't know, college is hard. Like, really hard. No matter how much work you put in, what grades you get, what classes you take, it's just all around difficult in the first place. When you factor in forming new friendships, learning to live independently, and personal issues, college seems downright impossible, yet people graduate all the time. How do they do it? Well, I'm not totally sure, but I'll make sure to tell you when I figure it out. So far, my college career has included the need for persistence, dedication, compassion, patience, tons of energy, hard work, and an encompassingly (that's probably not a real word but oh well) healthy lifestyle. I have to think about literally every step of every process and how it could possibly affect me in the long run, because when I act without thinking, I end up in searing pain. Until now, I have not accepted that this is my life. I told myself that this won't last forever, and I just need to wait it out, but I've been coming to realize that my pain is not going to magically go away. I don't just have headaches. I don't just have migraines. I don't even just have chronic migraines. I have a disease. I have a disease where my body attacks itself every chance it gets, and there is no cure for it. Right now, I barely even have treatments for the symptoms. I like to have the mindset that I am "just a normal college student", but that's not the case. I'm not normal in the slightest. I am extremely abnormal. Luckily, I've never had the goal of being "normal" in the sense of style, personality, and lifestyle, so I'm halfway there to accepting my abnormality, but I still have to learn how to accept that I am not able to have a normal, carefree, experimental, crazy college experience. I'm going to have to take the long road to graduation, from having a lighter course load to graduating after over four years of schooling. I'm going to have to pay more, do less, and be realistic about my life goals.
As to my current lifestyle, it's going to change quite a bit in the next six months. I have had a constant pain level of an 8/10 or higher every day for the past month and a half. I failed my finals in two of my classes, and got my first ever C, in my two favorite classes, no less. I have never had a final grade lower than a B- ever. Seriously, never. Once when I was in fifth grade, I had a D on a progress report, but by the time the final grades came out, I had an A. I considered a C or lower to be failing. Now, I have to change that thought because I know that I did not fail. In fact, I succeeded in my Winter Quarter. I passed the two hardest classes I have ever taken while I was having the consistently worst pain I have ever experienced. Because this pain is still here, I am going to "fail" yet again. I'm going to do something that I have previously considered a failure. I have to take a quarter off of school. Clearly, this is not something I want to do, but something I have to do. On Monday 3/28, instead of going back to Davis for my Spring Quarter, I will get an emergency admission into the UCSF hospital. I'm going to get the same treatment that I've gotten twice before, the DHE infusion. This is the big change in my life. Going to the hospital for DHE is mentally, emotionally, physically, completely exhausting. It takes a full month for me to recover and be back to normal and up to six weeks for the medicine to make my pain less intense. Because college is so hard, missing even two weeks of school would be too much to come back from, so I have to take this Spring Quarter off. There is a program that allows any student to take any one quarter off while they attend UC Davis, so logistically it is a relatively stress-free solution. So here's where my disappointment comes in: I'm leaving my new life. I LOVE my life in Davis. I love my community and my school. It has become my home, and my friends have become my family. I know that my friends feel the same way, but a small part of me worries that by me not being there for a large chunk of time, they will forget about me or lose interest in being my friend. I also worry about being behind in my classes and my "plan" for my life. All in all, the situation is very disappointing. I was looking forward to my classes, fun outings with my friends, and engaging in my social life again (since last quarter, I was kind of a hermit).
Even with my disappointment, I have to be okay with the situation because if I'm not, then it will be even harder for me to stay happy through this difficult time. Staying happy will keep my stress, anxiety, and therefore pain and nausea levels down, which will allow the DHE to do its job correctly. This is something that I have learned from my doctors and therapists, and I have been practicing it for years, but it is still one of the hardest parts of my migraines. I'm sharing this with you because I am still struggling with this process, and God told me that it will be better if I share my experiences. I would also appreciate your prayers in this difficult time.
"And we know that for those who love God all things work together for good, for those who are called according to His purpose."
Romans 8:28
Love always,
Sierra

Not Your Usual Update

It has come to my attention that I have not updated everyone on who I am and who is in my life at college. Also, it has been way too long since I've posted on here anyways, so here goes! As most of you know, I'm studying at UC Davis for at least the next four years of my life. Isn't that crazy? I'm in college. I'm living on my own, looking for a job, studying, and planning my own life. Since I was a little girl, I've wanted to be an adult and be in charge of my own life, and now that it is here and happening, I can't believe it. I keep waiting to wake up from my dream and still be at home in high school with the same friends, same situations, and same responsibilities. Every time I go home, I forget just how real Davis is. Davis is my life now, and home (Modesto) is my vacation from my life. That is a HUGE transition, especially when I've never even transitioned into a new house before. I've lived in the same town, same neighborhood, same house, even the same bedroom, for the my entire life. Now, all of a sudden, everything has changed. (Anybody else get the Taylor Swift song popped up in your head from me saying "everything has changed"?) This is the first major change to happen in my life that I am happy about. When I think of the things that have changed my life in the past, what comes to mind is: the newfound "freedom" of high school, losing old friends and gaining better ones, Freshman year to graduating, and then I think of my aunt's unexpected death, my uncle's passing, my headaches, doctors, hospital trips, and then that becomes all I can think of. The bad overshadows the good. I don't want that to happen with Davis. I want Davis to be the place where the good shines through the bad, or even better, there is good without bad. So, I've been avoiding some truths in my life. I've been keeping my sad feelings quiet and suppressed, thinking that they would go away on their own. (Which is completely silly, because I know that suppressing feelings only makes them worse, so you'd think I'd know better.) First of all, you need to be informed of what is in my life and who is in my life. I have an AMAZING group of friends here. I am not dating anybody, but I have met more incredible, godly men and women than I ever knew there were in this world. I always thought I was weird for my strong foundation of faith and how I try to live it through every aspect of my life, but every single person in my new church group is striving to let God live through their lives as well. Of course, none of us is perfect, but the important part is that we're trying. This is the first time in my life that my very best friends, that I get to see every single day, are also a part of my church group. The best thing about this is that when I need someone to talk to, I can go to any one of them, and they will be there for me as well as remind me that God is here with me too. Sometimes, when life gets crazy, I'm too focused on what is happening right in front of me. I forget to let go and let God. My ego gets the best of me, and I try to do it on my own. My counselor has an acronym for "EGO" that I can really identify with: Edge God Out. When our ego gets bigger, God's voice gets smaller, and you start to edge God out of your life. This happens to me way way way too often. I try to juggle everything in my life as is, all on my own, without asking God what He wants me to do or what I am even able to do. When organization, preparedness, and patience are the most important things you can do to manage your life as they are for me, the more I listen to my ego, the less organized, prepared, and patient I am with life. Not only do we (me and others like me) lose patience with life, but we lose patience with God, and then start blaming Him for our own mistakes. Even though my time here at Davis has been wonderful, I have had too big of an ego for most of it. I've been trying to put up a front that I am always happy, bubbly, energetic, patient, and kind. Deep down, I knew that this isn't possible for anyone, let alone me, yet I continued to pretend. When my close friends asked me how my day was going, it was almost always "good, how about you?" no matter what my day was actually like. Because I have a constant reminder that life isn't perfect, it is easy for me to think about myself that I am always sad or unhappy because I am always in pain, but just as I am not always happy, I am not always sad either. In fact, the majority of my time at college has been spent in bliss. Yes, I have lots of homework. Yes, I have to study for multiple hours every single day. Yes, I still end up procrastinating way too much on Netflix. Yes, I am still constantly in pain. When I have a bad headache, I find myself repeating these negative statements over and over in my head, but these are just half of the truth. I actually enjoy doing my homework. I love learning more about my subjects and expanding my skills. I like studying because I am studying MY topics: math, science, and currently, psychology. I am still constantly in pain, but I am in less pain than I was in before. When the intense pain subsides, the full truths come out and I feel better about myself. This can be applied to everybody's life. When you find yourself feeling sad or depressed, take a note of the negative thoughts that are swirling around in your mind, and later when you are out of your slump, return to those thoughts. I can promise you that most every single one of them will only be half of the truth. That's what Satan uses to trick us. He tells us things that we know are true, but he only tells us half of the truth so that it seems worse than it really is. (Don't worry, I'm not saying your negative thoughts are Satan in your head. They're just what Satan wants for you, and because we are human, we have these bad thoughts all on our own.) But, because we also have God, if you give Him the chance, the full truths will start revealing themselves to you. You will see God's hand working in your life. You will see Him in the little moments of happiness you get from the sun shining and in the relationships that build up your confidence and sense of belonging. This is because God is in every single aspect of your life, and He is just waiting for you to notice Him. God is with every single one of us, whether we believe in Him or not. The difference between believers and non believers is that Christians have God in their heart, not just in their lives. That is the ideal life on earth, one lived hand in hand with God.
"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you."
James 1:2-5
Love always,
Sierra
P.S. ^^I think I've found my new favorite verses.^^