A Day in the Life

So, I wanted to give an update, but I wasn’t sure how to do so. After a little thought and consideration I decided upon the idea of writing about a normal day for me. I thought this would give some insight for those wondering, and would be a more interesting way to share my days and thoughts than if I were to just list them out. So, here it goes:

The AM.

The starting point of my day always begins with the alarm. As soon as I open my eyes waves of aches and pains overcome me, and I immediately shut my eyes again, not wanting to remember any of it. Unfortunately, my wish is not granted, and after pushing the snooze button at least twice, I really have to wake up this time. I feel the sore muscles in my legs, and I keep them almost in a paralyzed state for whenever there is the slightest movement it sends off about ten different pains in all directions. Moving up I can feel the nausea in my gut from the night before, and added to that, the constant ache of my stomach. Next I am reminded again that I am very short of breath, and it often reminds me of when you come up for air after you’re underwater, and in those first couple breaths you just can’t get enough air no matter how fast or how hard you gasp. My heart is giving me trouble as well, and as I look over and watch my fish tank, I can see it shake every second or so as the beating in my heart shakes my whole head. I try to ignore also the pounding headache which includes all of my head- and when I mean headache, I mean top of the head, neck, face, jaw, all parts. In addition to my headache, my eyes are also burning and swollen. One day I woke up and my eye was swollen half shut, and didn’t open for an hour or so, which made driving to school a new experience. Another morning I woke up and I was so exhausted I couldn’t see straight- I’m not exaggerating. (That particular I stayed in bed awhile later.) Anyway, Realizing that I can’t close my eyes and try to escape the day, I have to convince myself to get out of bed. In my head I repeat the direction to “sit up..sit up….sit up now…” and often, and sometimes more than once, I have to count 1..2…3 and thrust myself up. Sometimes I fall straight back down, defeating all my efforts. After this I just give up and I have to roll myself out of bed and onto the floor so that gravity takes control, and doesn’t let me back into bed again.

Good. Step one is finished: get out of bed.

Step two: get dressed. This part renders itself a little easier since I have accomplished the most difficult jobs already. Putting on the first shirt I can find, and then some pants that I’m pretty sure match alright, I move on to my hair. Now doing my hair has become quite the task. Since my arms have lost quite a bit of muscle, whenever I lift my arms above my head to put my hair in a ponytail or something like it, I have to stop and rest about every 3 seconds. And let me tell you this adds a lot of time and effort to what was before a simple job. After finally finishing a passable job on my hair, I finish the small things left to do, and get in the car.

Awesome, we made it to the car.

From here it becomes easier and easier to convince myself to keep going. Because getting out of bed and getting ready takes two or three times as long as it did before, I usually end up eating my breakfast in the car. Now breakfast is a difficult thing to eat. My stomach has gotten into the habit of feeling nauseous almost constantly, and I also always feel full. But my brain however tells me that it’s time to eat. So I’m feeling sick, full, and hungry all at the same time. It’s really quite a unique experience, and brings a whole new level of difficulty to eating a breakfast bar. But after a few months of this, I must admit I’m getting pretty good at tricking myself into not throwing up.

So now, we’re finally at school.

Now school has become more, hm.. well just flat out more difficult. Because I’m extremely exhausted all the time, and feeling pretty sick every day, and usually behind in all my classes, it makes not only the academics challenging, but also brings even socializing into being some sort of an obstacle. In every class my mind can’t focus, and when I try to keep it focused on the material and the teacher, it’s like my brain starts to hurt, and it refuses strongly. In discussion classes I find myself barely able to keep up with the discussion, which I feel is pathetic, because it feels like the teacher isn’t even speaking English anymore. Also, I feel terrible because I will sit in class and be barely able to sit up in a chair and not fall over, and I’m trying to really focus on what we’re doing, or what class I’m even in, and I find myself unable to talk to my neighbor. In the hallways it’s a struggle even to say hi to someone in passing, because I’m completely focused on making sure that I just keep walking; left, right, left, right, etc. I can’t explain it, but everything is just so much harder than before. Because of all the pains and aches and exhaustion's I feel, I can’t even be myself at school. Often times, I can’t even be myself at home. I try to give my friends the attention and care they deserve, I try my best. I think I fail more times than I succeed however. Overcoming this new obstacle of still being able to be myself has proven to be one of the toughest trials I have faced yet. You have no idea (or perhaps you do) of how much I long to talk and laugh with my friends at school, or at church, or even with my family at home, but I just can’t. The limitations of my body have grown into limiting who I am it seems. This is truly what saddens my heart and spirit the most; not the partially paralyzed gut, or the muscle weakness, but the stripping of what seems the value of my life.

I’m not sure how exactly to explain it, I have to be honest, but I’m trying my best.

So, I get through school (or most days I do).

Coming home is great, and awful at the same time. I’m so relieved to have a break from running around all day, but at the same time I know I have a huge load of work to do, and all I really want is to climb into bed and never, ever get back out again. I slump down onto my chair and I swear every day I have this same argument in my head: to take a nap and not finish all my homework, or to just keep slaving away at it and lose the rest my body longs for. Usually I pick the latter, convincing myself only a couple more days till the weekend. I pull out my history book and start on the reading. I read one sentence. Okay I didn’t understand. I reread the first half. Okay I’m still lost. I reread the first five words, my  head is pounding, I see my bed out of the corner of my eye, no back to the book. Okay start with the first word: the. Awesome, great, I know that one. This is literally how each paragraph goes in each of my readings, and it is laborious to say the least. Reading and other homework now takes me three times as long as it did before, and I’m doing at least three times a lesser load. It’s truly a miracle if I get all my homework done.

Soon dinner happens, and I go back to my homework again. At last, it’s bedtime.

As I climb into bed, and settle down I remember, shoot, I forgot to take my medicines. I pull out the overflowing bag with at least 15 different pill bottles, and start to pour out the pills. I hate this part because I feel like I must be overdosing on something.. And I’m sure at least half of the medications do nothing for me. But, because I have to, I take them all, and finally get back into bed. It’s a bittersweet moment. I finally get to rest, but it is here that I experience again all the pains I have been ignoring and fighting against all day. I feel my legs burning, sore, with shooting pains going up and down. I feel the sharp tearing and ripping pains in my gut. I feel nauseous. I feel my lungs and heart burning from the strains of the day. I feel my head throbbing more than I’ve noticed all day. I feel my eyes watering up because they burn so much. I feel a sharp pain in my temples, like someone is sticking a knife in there. I feel my hands, which feel like they’re on fire, as the burn from all the use of the day. I feel like my lungs are too weak to open, and sometimes I hold my breath because I don’t have the energy to lift them to breathe. I feel like I can’t move. I feel like I must be close to dying, I got to be. I feel like my heart has been working so hard that surely it will give out at anytime.

And as I feel all these things, I have to pretend like I don’t. If I’m going to get any sleep, I have to put my mind somewhere else. My mind turns to school, no that’s definitely not going to put me to sleep. As I struggle to find rest I watch the clock go from 11:30 to 12:00 .. to 1:15… to 2:05.. Well at this rate I’m going to get no sleep at all, and I’ll wake up tomorrow feeling twice as bad as I do right now. Getting up tomorrow will be worse than this morning! Maybe I’ll sleep in tomorrow.. No, I already took my day off for the week. And anyway, I have two tests and a presentation tomorrow, I can’t miss those. But right now I won’t be able to think straight for any class, and I won’t be able to do well in the least. But I won’t be able to make it up later, and if I put it off for another day, I’ll just be more behind and will do worse. So, tomorrow no matter how I feel, I will get out of bed, and I will make it through school, and homework, and another day. I will finish this week whether I keel over dead at the end of it or not. How do I do this? How can I push myself like this every moment of every day? It’s beyond me.

“I can do all things through him who gives me strength.” Philippians 4:13

Every day brings its own obstacles and exciting experiences, no one day is quite like the last.

I long to make each day count, to look at each one like it is its own adventure.

Let’s begin another one. 

Why Persevere?

I’ve felt really lost lately. It seems this year, especially these last few weeks, have proven more difficult than any I can remember in the past. The hardest part has been pushing through it all. Even though I have many different things falling apart in my life right now, I’m still expected to keep going and moving forward. I guess out of anyone around me it is I who expects the most. School, and many other areas, has begun to layer one thing on top of another, and as I look towards the days and weeks in front of me they seem impossible. The hardest part though is knowing that if I push through harder, I will only feel the consequences of it later, making the days after even more difficult than the ones I am in now. So to me it seems pointless to keep going, if I’m only going to make things worse. I guess what I mean is that, to be more specific, one example is the pain I’m feeling today is only going to increase if I get up and go through school and the hours of homework that will follow. If I stay home and rest, I’m only going to have the school work pile up more and more which will come back to hit me later, and will eventually cause me to feel worse as I try to catch up with everything. So, for the last couple days I’ve wondered, why would I keep going? What is there for me? If this life continues on the way it has been, I can only see my health failing more, and everyday tasks becoming more and more difficult.

Another thought also came into my head when I was thinking about all of this. I began to wonder, what do I take joy in? Really. What makes me happy? If it’s just the good days, when life is comfortable and easy, and giving me things, then that definitely means I won’t be joyful or happy for most of the time that I'm here. So, instead I realized that I need to not only take the bad circumstances with courage, but actually rejoice in them. I need to learn to be happy when life isn't giving, but also, and more importantly, when life is taking. Just because these times are seemingly awful does not mean that they aren't as important for me as the “good times” in life. In fact, it seems that these trials lead me into being someone much more joyful than I could have ever been if my life had continued on normally; well normal as in if it had gone on as expected.

It is then that I read this verse, and it seemed to sum up exactly the guidance and encouragement that my soul had been searching for.

Romans 5:3-4 “Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”

Also, in another light;

Job 1:21, “The Lord gave and the Lord has taken away; may the name of the LORD be praised."

Blessed be the name of the Lord, for he gives and takes away. I need to learn to praise him not only for the things he has given me, but especially for the things he has taken away from me.

What counts?

So I started thinking.

And, like all thoughts, these thoughts came to me during my shower, in which place only the best ideas come from.

I divided up my last year into a few parts. The first part I decided was more like the coping side, dealing with all the new hindrances and troubles that I encountered, and kept on encountering through the months.

Now, I thought, I’ve moved on into the surviving stage. Where I learn to take the new difficulties thrown at me and relearn how to live and do things.

Before going on I have to state that this is in no way a pity party here or any such thing. I see it more as a decoding of what different experiences I’m having.

So with that being said, I’ll move forward.

I’m starting to figure out that while encountering these new obstacles I’m learning things from them. For example, one night I may not have the will or strength to study for an 8 am test the next day. Before, I would stress out about this, knowing that if I stay up and push through studying, I won’t be able to make it through the test tomorrow. But, if I go to bed, I won’t be prepared to even take the test anyway. So, seeing these two options would naturally make someone like me very worried and quite perplexed. However, only recently have I begun to understand what is worth worrying about, and what isn’t. Point of view maybe, some would call it. As I face that fact that yes I am sick and yes there will be many more of these days to come, and that no, my life isn’t revolving around this test, or even this class, it helps me to realize the value and worth of the things in my life.

Even some days when maybe it’s just that Monday where you get back a test you thought you aced and well, it wasn’t even close. And as you try to shake it off you go to your next class and turns out you have a huge essay due in a day or two, and you have no idea on what. And then you drop your plate at lunch. Or maybe fall down the stairs, just to add it into the mix. Well I don’t know about others but those days definitely hit me every now and then, and it’s harder than it seems for me to not get upset and just give up on the day. More often than not after only a few hours I find myself wishing that this day would be over and I could go to bed. It’s then that I heard someone say, “Thank you God for creating this beautiful and amazing day.” And I stopped. And thought. First thoughts were how in the world is this day beautiful.. and second were, it’s got to be wrong for me to be wishing for the weekend already. When I just go through each class and each homework assignment and just think of it ending before it even began, how is that for a life? I wouldn’t be surprised come Christmas and me not having appreciated one day between now and then. I realized that I have to change that because I don’t want to see how the rest of my week, and even year will go if that’s literally my attitude for every day.  Like I heard earlier, it’s a beautiful day. And if you’re not feeling its beauty, then change that. Do something now to make it something special and unique. What’s even more rewarding to me and makes my days count is giving my time to someone else, letting someone else know that they’re loved and they definitely made my day better, and I hope I can return even a piece of the favor.

Of course these are just small thoughts and small words. But words count, don’t they?





"This is the day the LORD has made; let us rejoice and be glad in it." Psalm 118:24

God I’m crying out to you.

The concerns of my heart seemed to have multiplied to such a burden that I cannot seem to carry.

I know that you long for us to cast our cares on you, and Lord I have nothing else to do.

I have no one else to cling to, and nothing else to cling to, but you and your mercy and love.

I feel so lost that I cannot see land. I feel like I’m sinking in the sea and barely breathing.

Not only have I felt the solitude of the journey in this life, but also Lord I seem to have been stricken down 

even more so with my physical health, and I am at a loss as to how I am to continue on in this state.

But you Lord and you alone have given me courage hope and a strength that I know cannot come from me.

I do not have many words to pray, but I will pray this;

Out of the complete desperation and loss I am feeling Lord, I cling to you and your saving grace as I 

continue to rise up each morning and face the world of which I have created this large mess.

I need you to help me pick up the pieces of my life that have fallen apart.

I pray that even in this life you have given me that you will be honored God, and that you above all will be praised.

Glory be to God who can create amazing things to come out of our struggles.

For I am nothing, and you are everything.

These are the cries of my heart. 

When I've stopped and thought..

Do you ever stop to think about the world- and how focused you are on your own? It becomes embarrassing to me the time spent worrying about myself, when really, there is so much more to this life than me. I feel I’ve been given many reasons to be overly focused on my own world. But what I want to take away from all this, or what I want to do with all this is step away and back out of the spotlight, so that whoever may be looking at me can only see who is really behind it all- God.

When I do that, it makes whoever may be talking to me or listening to me so much more special because I realize that I don’t deserve it, that it is a gift. It also makes me think about what I’m going to do with these gifts, and this turns my whole perspective from how can I make myself happy into how can I be one who is humble enough to allow God to do great things through. 

Pure Joy

In these past couple weeks I have been spending time with many different friends and family. What really struck me as amazing was being around those whose hearts were full of the joy of Christ. After I got home I realized that just being in their company was a joy in itself because they truly were satisfied and at complete peace with the Lord. Their joy was so apparent to everyone near them, even those just observing. The Lord opened my eyes to see that no one wants to be around someone who is down and has nothing to give. But everyone wants to be around someone who is full of the life God has given them. It was such a blessing to be able to be around these people this week, and I pray in the future the Lord would grant me a fraction of the joy I have seen around me.

In my time alone this week I was lead to a few different verses that all portray the true joy that the Lord can give.

“Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” 1 Thessalonians 5:16-18

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

“Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior.” Habakkuk 3:17-18

And in my prayers this week I pray these few things..

“Bring joy to your servant, Lord, for I put my trust in you.” Psalm 86:4

“Restore to me the joy of your salvation and grant me a willing spirit, to sustain me.” Psalm 51:12

Amen.

The dry stage.


That's the way I would put it.


The other day I went in for another EMG test. While waiting for the doctor to come in my mom, like always, asked me questions so that I would know the gist of what the doctor would say or what he's looking for. Somewhere in between the numerous questions I found myself blurting out, "It (the test) doesn't even matter. He's not going to find anything". It wasn't till then that I realized that I really have given up all hope of doctors. All the appointments and tests are endless and seemingly nothing comes out of it. No answers. Nope. Nothin. Of course each one you could say gets us closer to an answer, but for me I just need straight up you have it or you don't. And that is exactly what I don't get. Here in this stage, I'm not sure what to do. I'm one for action, and I can't stand long periods of time where not much is happening. So I pretend like there's nothing wrong with me. That way, I won't get upset with the doctors who keep telling me that there's nothing wrong. (Even though it's far, far from that.) 


The other thing I've noticed about this dry period is that people forget. Sometimes I feel like people around me think I was just being overly dramatic about having a disease because nothing dramatic or drastic is happening now. I will be honest, that is not even close to the truth of it all. I don't feel bad because I don't get sympathy or pity, no way! I just get confused on what I am supposed to do with this time. I want people to know that it's all still real for me, but when there's nothing visible going on, there's no way to do that. I also don't want to feel like I'm letting people down, which might sound weird when you're talking about a disease.  But I guess it's the pressure of having the disease, and having so many watching you, that you feel like you need to live up to what other people think of you.
I know it might not be what is right, but it is how things look from the standpoint that I am currently in.


Today I was approached by a woman in my church. She put together a small collection of things that meant so much to her as she was, and still is, struggling with her health. As one by one she explained the significance of each, and gave it to me, it really began to hit me how lonely I have felt recently. Knowing that someone had the heart and care to entrust to me many things of value to her all for my encouragement was so incredibly humbling, and so amazing. The self consciousness that had began to show itself in my life was stripped away and I was completely surrounded with love and affection.


Relationships, as I am beginning to understand, hold so much power in the lives of people. I'm learning to cherish mine and to grow each individually, as well as searching out ones to strengthen. For God did not give us this life to walk alone, but to share with others, continually building each other up to becoming the most you can be. And at the foundation of each friendship is love, and therefore Christ, creating each relationship to be as beautiful as He is.