Patience is Key

Soooooo I finished my first quarter of college!!! And I was successful in it, academically, socially, emotionally, physically... in every way possible, I feel that I was successful. There are lots of reasons that I was successful this quarter, the most important of these are God's perfect plan and my wonderful family. I have slightly adjusted my definition of family in the past few months, from blood relatives to anybody important in my life. I have discovered that God provides family to those who ask for it, even if it is not in the way you expect. My family has greatly expanded, and consequently so has my faith. Going into college, I was preparing myself for a multitude of times where my faith, character, and values would be tested. Well, it turns out that I was tested, but not in the way I expected. I anticipated temptation to participate in illicit activities that would threaten my health, personality, and possibly even my future, because that's what college is about, right? Testing the limits, making mistakes, and learning from them? So far, this has been proven to be true, but it has happened in the best possible way. Instead of experiencing temptation to go out and party with the wrong crowd, I was tempted to stay out all night line dancing, drinking boba, and playing card games. I tested my physical limits by staying out later than I ever have before, and I tested my social/mental/emotional limits by placing myself in situations that I knew I was slightly uncomfortable in, but that I also knew would strengthen my confidence. Because I tested my limits in these ways, I have built strong foundations for friendships, strengthened my body, and had incredibly fun times along the way. I entered college a fragile little girl who was still recovering from being in the hospital, and even though I've only made it through a third of this year, I am already stronger and smarter than I have ever been.
Yesterday, I visited my doctor at UCSF for the first time in six months. The appointment was very enlightening. I was reminded how serious and permanent my condition is. This is the first appointment that I have had where I forgot about the severity of the impact of my disease, and that is a victory in itself. That is proof that my treatments are working; even though my body is not healing, my mind is healing. For the majority of my past appointments in UCSF, I have left disappointed, spending the first 20-30 minutes of the 3 hour car ride home sobbing because I was not given any new answers. Even though this appointment was not all that different from any others, I did not cry on my way home. Instead, I made plans to spend some time with my aunt and little cousin, and rocked out to some throwback One Direction music with my mom. We even went shopping! Why is this relevant to you, you may ask? Because the little things you do to help yourself manage your pain do make a difference in the end. This was the first time that I did not have to consciously choose to think positively after a fairly negative experience. I have been working on training my brain to focus on the positive and not the negative, and until recently, it has been a conscious decision to turn from the negative thoughts and towards the positive ones. For the majority of this quarter, my brain had a tendency towards the positive thoughts. That is why this past quarter was so successful for me, because all of my hard work with my DBT therapist has paid off. (DBT is Dialectical Behavioral Therapy, a form of Cognitive Behavioral Therapy (CBT). DBT is part of my prescribed treatment plan, and it involves an active relationship with my therapist. My sessions with my therapist are not the usual kinds of therapy, where I lay on a couch and tell her every thought I've had in the past week. My therapist and I have discussions about how I consciously and subconsciously respond to the pain. I learn proven techniques to think positively as well as the chemistry behind how my brain functions in relation to the pain.)
Every time I stopped myself from thinking about how much my head hurt and instead focused on any positive thing, big or small, I trained my brain that positive is good and negative is bad. You'd think that that would be obvious, right? Clearly it is not obvious to the migraine brain, though, because so often depression, anxiety, and other real problems are developed because of chronic migraines. This is why patience is key, because pain is a very serious thing, no matter what kind of pain it is. Pain can be debilitating in multiple areas of your life, and often times, it is impossible to defeat on your own. It is also impossible to simply stop pain. You cannot throw it away, choose not to feel it, or decide that is is unimportant. Unfortunately, it takes patience to deal with pain, and I have learned that I am not very good at patience. I think this is one of the things that God is going to teach me through this trial. God is teaching me patience. True patience shows faith in God, even though it may seem like a simple "worldly" task. Developing relationships, preparing for exams, even waiting in line requires patience, and therefore faith. Faith that sooner or later, what you're waiting for WILL come. Faith that it is worth your patience. Faith it is God's will. Faith that it is worth it.
"But they who wait for the Lord shall renew their strength; they will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Isaiah 40:31
Love always,
Sierra

Day Three... Sorta

I clearly have gotten a bit behind in posting, but I am going to play the "hospital card" because I was exhausted last night. Being in the hospital is just plain exhausting. Even though I just lay in a bed all day, I am constantly doing something. I feel like I have talked about this before, but I am too tired to remember... which is ironic. But anyways, I am always busy. I wake up, order breakfast, and my nurse comes in to give me my morning medicine. I am usually fed, awake, and alert by 10:00, at which point my mom and I go for a walk around the hospital. We like going just around my floor exploring and watching the hospital robots move all on their own, stand on the glass floor (well I stand on it and my mom stands on the floor below it) and wave to each other, walk around the outside garden, explore another floor, and/or other activities such as these. I walk really slowly because I am tired and a little weak, so we walk for about 15-20 minutes total, not getting far and not doing much. It's nice to spice it up a bit with a new place to walk to, but we only do one at a time. There are activities going on around the Pediatrics department like the media room, art therapy, music therapy, the teen lounge, etc. but not many of them interest me enough for me to spend my energy on. Yesterday, my mom and I had company on our morning walk, because my grandparents came for a while, morning to early afternoon. It was really nice for my mom and I to have some more company. After our walk, we chatted, then I got tired, so we watched Frozen! My grandma had never seen it, so that along with my love for it made it the perfect movie to watch! They also got to stay for lunch and experience the surprisingly yummy hospital food, and then we chatted some more, and they left so I could get a massage. Unfortunately, the massage lady and I had a misunderstanding so she didn't show up when I was expecting her, and while I was waiting, I took a nap. Even though I didn't fully fall asleep, that rest time really helped me get through the rest of the day. I fell asleep as I was waiting for my boyfriend to come, and I slept past the time he got here, but luckily he is sweet and patient and my mom kept him occupied giving him a tour of the floor. I woke up and started pushing the button to raise my bed into a sitting position, and saw him and my mom peek through the window in my door. I guess they had come by a few other times, peeking in when I was asleep... but oh well I needed the nap. So for the rest of the afternoon, I watched movies with him and my mom, went on our usual afternoon walk or two, and had dinner with him. After dinner, we went for a walk just the two of us before he had to leave, and that fifteen minutes was the best part of my week so far. It never ceases to amaze me how just being next to him makes me feel better. Every time I stop and think about that, I thank God for him. I don't know where I would be without him... but I definitely would not be this happy. Somehow, my headaches drew us together, and no matter how life ends up, I am thankful that I have him now.
Now that I have started down this path of thankfulness, I must venture on. Through my headaches, I have met and become close with people who otherwise would never have been as big of a part or even a part of my lives otherwise. This is another way that God makes good out of bad. Like I've said before, I don't think God chooses to give certain people bad things. Satan gives bad to everybody, and God uses His power to only allow the amount of suffering that you can handle. When people hear about my migraines, I often get the response of "wow that all sucks but to have to be dealing with it at 17... that's just worse." I don't really agree with that though, because God has a plan for me. I have big goals. All of the data from all the other girls who have started getting migraines around the same age I did, when they get past the puberty stage into early 20's, the migraines die down and become much more manageable. So, with my big goals in mind, and also thinking of the big picture of my life, now is the best time for me to have a headache every day. God gave me the courage, passion, drive, all the qualities I needed to succeed in high school, because I have succeeded. I am going to my college. The college I want to go to. All because God has blessed me with the personality to make it through this time as well as the support system I need to compliment my personality. I am forever grateful for those who have prayed for me, are praying for me, and will continue praying for me. People I don't even know personally are praying for me, and I find that amazing. The only reason I have so many people praying for me is because of my immediate support system. My church is wonderful, in the members as well as the symbol. MCC (Our church name) = Mission. Christ. Community. All three of which I need, all three of which I have. I have the mission to someday become a doctor and impact peoples lives in the same way my doctors have in mine. I have Christ in my heart, my family, my world. Last and definitely not least, I have community. I have community in my family, who all pray for me, and ask their friends to pray for me as well. I have community in my friends, who have neverending support, love, and patience for me. I even have community in this hospital. God has handpicked each and every nurse that has been here for me, and every single one of them has been fabulous. Yes, I am currently in the hospital with a tube in my arm giving me medicine that makes me feel icky, but it is only temporary. Good things will come. Never forget that. Good things will always come.
"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" Jeremiah 29:11
Love always,
Sierra

Day Two

So today was not as easy as yesterday... it all started last night. At 10:30 PM I got another dose of DHE, and at about midnight my chest started to feel uncomfortable, like there was a big weight pressing on my chest. I called my nurse in, and she checked my vitals, all of which were normal, then messaged the doctor on staff for the night. The doctor told her to pause the DHE until she came up to assess me, so it was paused for about 20 minutes. In that 20 minutes, my chest started to feel better, so the doctors agreed that the pressure and pain I felt was just my body having a completely healthy reaction to the DHE. They also said that the uncomfortable feeling should go away as my body gets more and more used to the DHE, which so far has been the case. While I have had some slight pressure during my two infusions so far today, it has not come near to the level it was at last night. Today I have also had a bit more trouble with the nausea. I have figured out that my stomach gets upset during the infusion and lasts for about half an hour afterwards as well. So, I took some tums and it is better now, so far at least...
Mostly though, my problem was with my head. It is ironic, but the DHE infusions can also induce a headache, or in my case, worsen a headache. Since my headaches are bad all on their own, today my pain level has been at a consistent 8, reaching a 9 multiple times. I could have taken medicine for it, but I did not want to. I don't like the feeling that the medicine gives me... I get woozy, weak, my head feels fuzzy, and I sleep for hours. I did not want to give in today in case tomorrow is even worse. One of the tricks with getting the best possible outcome from the treatment is taking care of me in the meantime. Even though I am used to just dealing with the nausea or pain, I should treat either or both in order for the DHE to work its magic properly. So, with that in mind, we are going to assess my headaches tomorrow and if they still are not better, I will be treated with the sleepy medicine. I am praying that it gets better tomorrow though, and I appreciate your prayers as well.
Sorry for all the technical sounding stuff if you don't find it interesting... Personally, I find it all fascinating! So fair warning, here comes a lesson type explanation of DHE, what it does and how it helps. One of the side effects is leg cramps, and it happens because of what the DHE does to my body. The DHE works for migraines because it constricts your blood vessels. Part of what causes migraines is the overload of nerve activity, which comes hand in hand with the blood pumping incorrectly. I'm not sure exactly how the blood vessels in my brain are working incorrectly, but I am guessing that it is because my blood vessels are overactive and that the blood pumps too quickly all throughout my brain. So, DHE constricts my blood vessels, guiding the blood to pump more regularly, therefore decreasing the nerve endings, then decreasing the pain. While it is amazing that it works so well to fix the blood vessels in my head, the rest of the blood vessels in my body are working perfectly 24/7. Unfortunately, the only way for me to get the infusion is for the DHE to pass all the way through my body, flowing from the PICC line into my heart, then down to my feet and hands and up to the tippy top of my head. When blood vessels constrict, blood clots become more likely. A blood clot is a small area in a blood vessel in which the blood starts to coagulate, kind of like when you get a cut and the blood dries on top of your skin, keeping any more blood from seeping out. Blood vessels are supposed to be able to move blood all around your body without any sort of hindrance, so blood clots are potentially very dangerous. Because of this, I take certain precautions. I move my arms even when I am sitting down watching a movie, to get a drink of water, color, text, etc., but I move my legs hardly at all when I am sitting down. Since my arms are moving often enough, the blood keeps flowing normally. If I just sat on my butt and watched movies all day, my leg muscles and blood vessels could cramp up so much that blood clots could form. It is still possible for me to get blood clots whether I go for walks or not, but it is much less likely for them to form if I go for a walk a few times a day. I don't have a lot of energy, so typically I just walk around my floor, go down the elevator to the garden, or explore another floor. I have not been on a walk longer than fifteen minutes at a time and probably will not be up to more than that much until a few weeks after I get home.
I am sharing this information because I have wonderful friends and family out there who want to know how I am doing. I am also sharing for anybody who might someday need a DHE treatment, be interested in neurology, or are just nerds like yours truly. I cannot explain any further why I am sharing, because I truly don't know any reasons beyond those. The only other reason I have is that God is telling me to share my story. I pray that He will be able to use my suffering to help others, whether they have a similar burden or not.
"Do your best to present yourself to God as one approved, a worker who has no need to be ashamed, rightly handling the word of truth."
2 Timothy 2:15
Love always,
Sierra

Trying To Fix It

After the whole ordeal with the lumbar puncture, we found that the pressure of the fluid in my spinal column was slightly higher than average. The next step was then to treat me with medicines that lower the pressure. We didn't realize until months later that my headaches weren't because of the pressure in my spine. After 4 months of no improvement, I started to feel hopeless. My doctor could tell that I was straining to keep going through the pain every day, so she suggested that I see not only a counselor, but also a psychiatrist. I have tried many counselors since then, and I have finally found the perfect one. The psychiatrist is also wonderful. I thought that the first time I saw her she would just say oh you're depressed let's give you some medicine for it. But she didn't. She listened to my history and got a feel for who I am, and when I was finished, she understood me. I have had moments where I've been depressed, but then again who doesn't?! It's a natural thing. But I am not nor have ever been depressed. Which I am very thankful for. Depression ruins people... I've seen it happen to family and friends. While I am not depressed, I do have anxiety fairly often. Which I think is totally understandable for the situation I'm in. Anxiety can occur in anybody for any reason, and for some it's worse than others. I am glad we caught my anxiety early so I am now taking medicine that stabilizes my mood. I've noticed from school and other stressful activities that when my mood fluctuates, my pain fluctuates with it. It takes time to learn and understand how your body reacts to anything life throws at you. But again, just try to be patient. It will get better, it just might take 2 years or even longer. Something good will come from your suffering, even if you don't see how yet. 

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." (James 1:2-4 NIV)

Love always,

Sierra

Losing Stride

After Dr. B, Dr. A referred me to another neurologist, Dr. C. It took some time to get an appointment, so until I saw Dr. C, I went to other specialists to see if my headaches were caused by something other than my head. I saw a cardiologist, audiologist, and various other "ologists." According to all of their tests, I was a normal, healthy teen girl. Most attributed the headaches to hormones or said it would be a temporary grievance. Finally, it came time to see Dr. C. We had to drive two hours there and back for the appointment, but it was worth it.
Dr. C walked into the room ready to listen to my history, the tests that have been done, what kind of pain I had, when it started, etc. After about 45 minutes of listening, I finished my storytelling and Dr. C looked at her notes, thought for a minute, then looked at me. She told me that she had a plan for a course of treatment. She said the first step was diagnosing the problem, so she thought I should get a lumbar puncture. I will tell you all about that tomorrow, because I would like to stop and thank Dr. C. She was the first doctor to seem to genuinely care about my well being and was ready to treat me to the best of her abilities.
For anybody going through a similar experience, and has not found a doctor who is more than just a degree, be patient. It took me 5 months to find the right doctor. I'm still not cured and I have moved on to another doctor, but Dr. C is the reason I got through the beginning stages of chronic pain. For some people, being healthy is just a part of their lives. For others, healthy seems nearly impossible. But do not lose hope. God has a plan for you. It probably will not be what you expected or what you initially want, but in the end it will be perfect for you. Place your trust in God and you will go far.
"Rejoice in hope, be patient in tribulation, be constant in prayer."  Romans 12:12
Love always,
Sierra