I started as a missionary in Mongolia, I am now a college student with severe chronic pain, and I will always be fighting the good fight of faith.
Friday, December 17, 2010
A Poem, just in time for Christmas.
SMA syndrome, and Gluten Free
Friday, September 17, 2010
Health Update, and possible explanation (finally!:D)
Friday, September 10, 2010
Why the hardships and suffering?
Wednesday, August 18, 2010
Mission Impossible?
1- My situation isn't changing, and might not for a long time.
2- That's depressing.
3- I can't keep life on hold or just wait for this illness to go away,
4- but I can't live life like I used to.
I mentioned a while ago that I was starting a new mission, separate from mongolia and full time missionary work. Before I left I was busy busy busy, working while going to school, volunteering for work experience, playing volleyball a decent amount, camping and hiking on the weekends. Then I started this blog as an energetic, totally excited sister missionary who had a crazy strong desire to serve the Lord and the Mongolian people. While getting ready to go I remember sprinting during every gym time and trying to get physically exhausted in order to handle sitting at a desk for the rest of the day studying. While in Mongolia I was lucky to have a companion who was williing to get up at 5:30 a.m. on preparation day so we could play soccer with the Elders. Then we would sometimes run to appointments so we could fit more lessons in a day. Some weeks we would stop by several homes on the way to church and pick up as many people as we could. We stood out enough in our skirts and everything, sprinting in the ger districts and trying to hold onto our bags I'm sure made people think we were crazy. ;)
Sorry about the trip down memory lane, its just that I didn't realize until now how much we define ourselves by what we do. Our accomplishments, our hobbies, how we spend our time and what we love to do make up our identity and how we would like the world to see us. I love being known as an athlete, it embodies what I truly love to do. I really enjoy working with people who have developmental disabilities, I value their friendship and it is a very rewarding and fun job. I love hiking, camping, being outdoors, and taking pictures of beautiful places. This is who I am. But now......... the things I do are vastly different. In a way I have lost what I thought was my "identity". (at least temporarily, I don't think my illness is permanent but it is definitely choosing to hang around longer than I'd like).
Its been a rough week pain wise, but besides that I was trying to understand why I was mourning so deeply and completely. I had lost some months of my mission and time in Mongolia, that was really sad, but I was lucky to have the time I did. I still have my wonderful family, and good supportive friends. I have knowledge about the plan of salvation and my Savior, so why was I so blue? Along with the things I've realized lately, I need to add that
5 - I am mourning for the loss of myself.
If we are defined by what we do, then I really don't like who I am now ;) (couches, movies, trying to sleep, pain control.) But that isn't how it really works, right? Each of us is more than just what we do. So i'd still like to write about my new mission; the mission to take control of this illness instead of letting it take control of me.
Mission Impossible? I think not, for with God all things are possible.
Monday, August 2, 2010
Living with the Point System.
"Imagine that you wake up each morning with a certain number of points. If you slept really well and did nothing to make you sore the day before, you might have 15-20 points. If you had a rough night and worked a lot yesterday you wake up with only 5 points. On the average day you have 10 points. Each movement and action costs something. Showering = 5 points. Getting dressed = 3. If you put your shirt on backwards or want to try on something different, the 3 points are wasted and you need to use 3 more. On an average day showering and getting dressed uses up most of your points before breakfast. You realize showers aren’t necessary daily.
Breakfast means lifting the gallon of milk out of the fridge (1 point), carrying it to the table (1 point), getting a bowl and the cereal (1 point), you get what I mean. Putting breakfast away is costly too. Sitting up strait in a chair costs a point every few minutes, so things like responding to e-mails or working on a computer become difficult. Not even talking is free. As you run out of points you get short of breath and need to stop talking.
Walking drains points too. Anything more active than walking is out of the question right now, you barely have enough points to shower every few days. Pain keeps very careful track of the points that you spend so there is no cheating the system. When the points run out you have no choice but to stop and rest. That might mean having a chair in the kitchen so you can rest while you stir a pot on the stove, or finding the closest bench in a store and waiting until you have enough points to get back to the car. Resting can earn you a few more points. You learn to save them up for what you really want and need, just like you would save money for that new bike you really want. You save points so you can call and talk to your friends on the phone, make it to a doctor’s appointment, or paint for an hour. But each day there are things you really want to do that you simply can’t pay for. You can’t overspend, because it physically hurts and makes you weaker and poorer for tomorrow. The worst is when you really need medicine but you don’t have enough points to go and get it. Thank goodness for close family and friends at this point, calling out loudly and asking for help costs points too.
When you are in public and around others you worry about seeming rude and standoff-ish. From the outside you look fine, others can’t see the painful point system you are tied to. They wonder why you won’t play volleyball or join in the conversation. It is hard to focus on others when pain keeps bringing you back to yourself, and all your points go towards staying standing and composed. What you want to do and what you can do become two very different things. It is hard to meet new people because their first impression of you is so different than who you really are. But you can’t stay out long anyways, your points are almost used up."
I was trying to describe to a doctor how I could only do a certain amount of things a day and how sometimes i'm just plain spent, and the idea of points came to mind. Those that suffer from rheumatoid arthritis, auto immune disorders, chronic back pain, clinical depression, foot or knee injuries, fibromyalgia, or aging in general, experience the limiting “point system”. It is invisible to others. It has definitely made me more aware of what others might be going through, and I have no place to judge anyone. Even when people look “fine” and “healthy”, they can be battling with pain or disease. I’m going to try starting college again in a few weeks and that is going to add a lot of physically costly things to my to-do list, but I’m already marking out where the good soft comfy chairs are around campus so I can earn more points during the day ;)
So to all of us that aren’t limited, ENJOY LIFE!!!! :D. We might not always be so lucky, do all you can while you can. And to those of us that are limited, I can promise that there will be relief. Christ conquered death, and has promised that all of us will be re-united with a perfect, healthy, pain free body for eternity. Sounds so wonderful, and it will be a free gift to all of us :) (see Alma 11:44-45 in the Book of Mormon. If you don't have a copy of one you can access the bible and book of mormon from our church website, Click the link on Alma 11:44-45 to read those scriptures, seriously they are so good! (and give hope to all us hurting people ;)
Health up-date
We still don’t have a name for whatever is going on with me, but the doctors have been great and have done a bunch more tests. More ultrasounds, blood work, acupuncture trials, and referrals are in for the next few weeks, i’ll keep you posted and let you know if we find anything out. My reflexes are still hyperactive and I have weird little muscle contractions and spasms throughout my back, ribs, arms and legs that suggest something neurological, and my pain sensors are still revved up, especially on my right side by my ribs. The neurologist said some infections and viruses can cause damage to the central nervous system, so maybe that happened. A GI doctor says my liver is very firm and might be enlarged so we are looking more into that too. We have ruled out anything rheumatologic we think. The plan is for me to see doctors at the University of Utah when I get to Utah in a few weeks, and maybe go to a pain clinic. At this point I am totally okay with us never finding out what it is as long as it goes away ;) We will see how college goes, I won't be able to have the life style I used to but I should be able to at least make it to class. Whether or not i'll be able to focus in class is pending haha ;) I'm excited to see family in utah soon! love you all!
Wednesday, July 28, 2010
joke and hope.
Tuesday, June 8, 2010
About us. (a little reminder.)
Sunday, May 30, 2010
Bad dream.
Sunday, May 23, 2010
Lessons Learned.
Tuesday, May 18, 2010
A Poem. (not written by a poet.)
I am not a poet. In fact the only time I remember trying to write poetry was when it was for a 5th grade project, and we needed to make our own poetry books. I thought it was a very difficult assignment ;) But I was looking through a study journal I used in Mongolia today and I found this poem I had written a night or two before I flew to Hong Kong. Our mission president had asked us to study consecration and sanctification and so much was going through my mind as the possibility of my mission coming to an early close was becoming more of a reality. In those late last hours in Mongolia, these words came to my mind. I think the Lord was and is still trying to teach me.
I am still realizing what it really means to be in the Master's hands, and to surrender all to Him. I have taken some pottery and sculpting classes and I love the messy clay covered rooms, if you have ever worked with clay you can probably picture a room or studio covered with lumps of clay similar to the poem below. ;) I am still not sure what this poem should be called.
A master in his studio looks out at his supplies,
There is clay a plenty to fulfill his grand design.
He picks up a piece of clay and attempts to start,
But is interrupted by a cry, “Hey I’m not your piece of art!”
This clay is hardened, cracked and cold, shapeless and ugly too,
Then the master kindly explains “I have great plans for you.”
“If you will let me sculpt you, and will be moldable in my hands,
I shall make you beautiful. If you could only see my plan.”
But the stubborn clay refuses and remains cracked and dry,
“I can not shape or mould you” the master softly cries.
“You have become too hardened and refuse to follow my will.”
He placed it on the table, it remains cold and shapeless still.
He moves on and starts working and things are going fine,
This clay is soft and allows the master to shape his design.
It comes time to remove little pieces, unwanted clay from here and there,
But once again the master stops as a voice fills the air.
“Haven’t I been shaped enough? You’ve improved me with your hands,
Now don’t pick or take anymore, this is where the sculpting ends.”
The master sighs and thinks “If only they knew,”
And then he kindly explains “I have great plans for you.”
“If you will let me sculpt you, and will hold nothing back,
I shall make you beautiful, in nothing will you lack.”
But try as the master might the clay refused to give
The pieces that obstructed the beauty hid within.
Then a voice called across the room, “Master, use me.”
“I am of no worth here on my own, I will follow thee.”
The master gratefully gets to work, the clay following his every will,
The clay couldn’t see the grand design but he trusted the master’s skill.
The clay patiently endures as beauty is revealed,
But sculptures tools are sharp, and pain the clay did feel.
“Must the process be so rough?” the clay meekly asked,
“Thou are poking, cutting, ripping, pressing. Is it necessary for the task?”
“Yes my child,” the artist replies, “ thank you for giving me your trust,
I only remove that which is unwanted, and cause pain only when I must.”
The master smiles and says “I have great plans for you.
With your humble trust in me, there is nothing we can’t do.”
The clay replied “I know thou lovest thy creations, and only want our best.
I do not know thy grand design, but I don’t need to know the rest.”
The master keeps on working and today is shaping still,
There is no end to what he can create when we give all and follow His will.
We too are in the Master’s hands, what will we each do
When the Master kindly says, “I have great plans for you.”
I know how I want to answer that question, but actually doing it and putting up with the pokes and pricks is a bit harder ;) But when we can remember the reason for the pushing, pinching, and purifying we don't become bitter or angry. I've sculpted things before and it is completely necessary to remove pieces and cut things away. God is the artist, and can see all the unwanted pieces. And if He wants to change certain things about me, then I should let Him. ;)
Saturday, May 15, 2010
It won't last forever.
I am laying on my bed while my lovely sister Tori is cleaning up our room for us. She holds up stuff and asks me where it should be put, and she cleans while I dictate. This is one of the hardest things for me about this new situation. I can’t clean my room by myself. And it is hard to unload the dishwasher, and to help my dad organize the garage. And mowing the lawn is now out of the question. I end up on a chair, or a couch, or a bed, and my family works around me. Now some might think that getting to lounge around and never needing to do chores would be pretty nice ;) And if you think of it that way i guess it is nice. But if you think of it as not being able to do the simplest of daily tasks without help, it is a little more frustrating.
I was talking to a friend last night and I mentioned how I just hope this won’t last forever and he immediately said “well we know it won’t last forever”. That is something my dad and doctors have been telling me since October, but as more time passed I found myself doubting that a bit. Last night my friend reminded me how comforting it is to remember that I do know that. I don’t just hope it, (well I do for the near future) but I do KNOW it. And thank goodness for that :)
Sunday, May 9, 2010
A new mission...
But, I am still trying to get closer to Christ, and am having amazing experiences in the process. I am learning and experiencing new things, difficult things, and am realizing my blessings more than ever. I am not in mongolia, I am not wearing a black name tag with my name and Christ's, and I don't get up at 6:30 am, ;) but I started this blog so I could share my experiences about learning about Christ and helping others learn about him as well. And those experiences haven't, and will not, stop.
I am at home with my family in northern California (which is a beautiful and sunny state, the rolling hills and pure blue sky look so familiar, and are similar to mongolia). And I am sick. Well, kind of. I hurt a lot. I am grateful to know that whatever is ailing me is not dangerous, in fact I am quite healthy according to medical labs and tests. But this lack of definite results also means that we can't really explain what is going on, and we don't exactly know how to fix it. The current diagnosis is Fibro-myalgia. I didn't know much about this syndrom, and I am embarassed to say that at first I didn't believe it was a real thing. I asked my dad who is a doctor if Fibro-myalgia is even a real diagnosis, and He answered by saying " You are living it, you tell me if it is real or not." It is real. I am still impressed by how completely it can alter your life, and how a body can hurt so much without an obvious cause. Chronic pain is a monster. It stocks you, taunts you, teases you, and sometimes just plain controls you. I struggled for several months with some anger and depression, which I hear is quite common in chonic pain patients, but I know now more than ever that Christ is always there to heal us. It may not be a physical healing, but the soul is more imporant than the body anyways. Once we let Christ heal our hearts, we can experience peace and pain at the same time. Sometimes it is harder than others ;), but it is possible.
You know how little children hate taking medicine? They cry and scream, and can't understand why their parent would force them to drink something that tasts so bad. But we all know medicine helps, and it really is for their own good even though it tastes bad for a few seconds. I keep reminding myself that right now I am the kicking and crying child. My current situation tastes really bad, but a loving parent knows it will help me in the long run.
So this blog is now about my new mission. It is the same mission that each of you are trying to complete. The mission is to be worthy of the reward, happiness, and eternal life that Heavenly Father wants so badly to give to us, and to help those around us recieve it too :)