And the verdict is...

    I do not have Gastroparesis. What now Doc? So much for that perfect fit. I think it brings my body joy to torture me with all these 'negative' tests. In 5 years I think the only test that has given me any answers are the ones (i.e. the two) that diagnosed me with POTS. Beyond that I am completely normal...or so abnormal that I have fooled some of the best and brightest doc's in the business. I wish I could just quit but I know I'll never be happy if I give up even if I never get answers. At least I'm trying. Could I get a little credit for that? I don't think it's healthy for a spirit to be broken this many times in such a short period of time. I HATE medicine, I HATE tests, I am not particularly fond of doctors and I absolutely HATE POTS!! UGGHH. A word of advice; research is always good but also dangerously depressing. Take caution.
    In my research today I discovered that if I pass out and someone decides to sit me up they could in fact kill me. Good to know! I also learned that although I have the medical vocabulary of most med students I understand little to non when researching actual medical sites that might actually help me understand my own body. Too bad. I think they need to sit down, think hard and write all the information they have about POTS in English and call it 'POTS: A comprehensive guide to your body in terms you can actually understand'. Just a thought.

Isaiah 53 and me...

    Today starts my first day of online classes. I'm kinda nervous I'm gonna screw this up but generally excited to finally have something to do! Maybe now I won't feel so lazy. I am taking 15 course credits this semester so it shouldn't be too much to keep up with. One of my classes is Children's Literature and I basically get to read children's book for a grade...we'll see how much I actually like that. My other classes are US History, World Civilisation, and US Economics...Exciting stuff. I am currently thinking about attending Cornerstone University next fall for a degree in Performance (Contemporary Christian Music). It sounds like an exciting program and I have decided that whether or not I feel 'well enough' to go to school I am going to get on with my life and stop waiting for it to get better. It may never get better and I don't want to look back on my life and say it was unlived.
    I was reading in Isaiah last night. I read through chapter 53 and I realized that Jesus not only understands ultimate suffering He also understands my mundane sufferings as well. I encourage you to read this entire chapter. You will be blessed.

    Isaiah 53:3&4 "He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted."

    He took on POTS. He knows what it feels like to live with POTS. I cannot identify with Him in suffering but He can identify with me. This whole chapter is really quite beautiful and amazing. It talks about Jesus' life and death long before He was ever born. But what is most amazing to me is that this chapter really emphasises Christ's sufferings in every stage of His life. From lack of beauty and afflictions to death on a cross. He suffered for me and He suffers with me. What an amazing God.

Here I am again...

    I left for New York at 8:00am Friday morning and arrived there 14 hours later. Graduation was long and emotional. I can't believe I was able to finish. This year has been one of the best years of my entire life and also one of the hardest (It amazes me how often those two coincide). I have been stretched and pushed in ways I didn't know were possible. I have been challenged and tested in areas I ignored in my life. God gave me the most amazing friends this year. I was so worried I would get a roommate that I would struggle with the entire year and not only did God answer that with more than one truly amazing roommate He also gave me amazing friends. I hadn't even thought to pray for friends in general but God gave me the perfect ones anyway. He's pretty amazing like that. The down side is that it kills when you no longer see them on a day to day basis...
    This year has brought on a lot of firsts... First year at college, First time on my own, First time going to ER, First time riding down a waterfall (not on purpose), First time I really saw God's sovereignty, First time I understood God's complete and unconditional love, First time counseling, First time I pulled a big prank, First time I apologized for pulling said prank, First time writing and giving devo's... I could never begin to fully describe or explain all that I have learned and all that God has taught me through out this last year. I know I have so much more to learn.
    POTS makes everything more difficult...I can't even explain. I'm trying to come up with something encouraging and positive about POTS but whatever I write will just be dishonest. I'm not in a good place, POTS is not a positive thing right now, and its has been extremely painful this past year but I will say this; Although I cannot see the good POTS will bring and although I have no idea how I am supposed to live my life with POTS I am certain of one thing...God has a purpose and NOTHING in this world is random or meaningless. I may be angry and confused and frustrated now but one day I will understand God's plan and I will be able to say this was one of the 'Best and hardest times of my life' as these two words together so often describe the times in our lives that have made us who we are.

Day of torture complete...

    Had my test today and was finally able to eat!! Yesterday was excruciating. I felt horrible with extreme nausea and a massive migraine. Eating is good for your body. Just saying. No food and it revolts. Surprisingly today I haven't been all that hungry. Weird huh? Anyway for the test I had the privilege of eating radioactive eggs. Then they periodically took pictures of my digesting food for about an hour and a half. It was painless...except for the whole day before thing. Glad to have it over.
    Started packing today for my trip!! Trying to get everything ready; ipod, camera battery, nails...etc. I'm a few things and 15 hours short of walking out the door and getting on the car for about 13 hours. Never fear, I have my ipod charged with new music to check out, crayons, a coloring book and my journal for when I get creative, DVDs, a good book, and my thoughts to occupy my time. I shouldn't be too bored. I am so very excited to see all my friends, this weekend should be a blast.

Tests, stress, and a weekend with the best...

    My Gastric Emptying test is scheduled for 8:00am on Thursday which means no food or pills 24 hours prior. I have posted notes on the fridge and pantry doors to remind myself not to eat. I will be drinking a lot!! Especially drinks high in sodium and electrolytes. I apologize in advance for my crankiness and short temper. Remember, I will not have eaten, my blood pressure will be lower than usual and I can't eat salt to fix it, and I will not be able to take medicine for my nausea. You have been warned. I am excited to finally be taking this test and hopefully it will help the doctors help me feel better.
    This college thing is not going well for me so far. I went to sign up for my online classes and most all of them are filled. I need to take at least 12 course credits to hold off the payment of student loans. Right now I am signed up for 11 credits and am optimistically awaiting someone to drop a math or english class. Needless to say I am stressed. I don't understand why or how I always do this to myself but here I am once again.
    Exciting news!! I will be back in Pottersville, NY this weekend to see all my BI friends...and graduate, of course. It will be a very long drive so I will most likely feel horrible while I am there but I'm hoping I feel good enough to enjoy being with my friends. If not I'll fake hard and crash when I get home =] I'm such a good faker I fool myself sometimes. But my mom is usually there to remind me how I've really been feeling! When people ask I just get so used to saying I'm OK that sometimes I really believe that I am...until I think for a minute about the week I just spent watching movies on my bed because I felt too sick to even sit up. Yeah, that's when it all comes back to me. I prefer to fool myself.

Who knew...

    Last night I was hurting. Sometimes it just feels like some one has stabbed a knife into my heart and disguised it as POTS. I try to be understanding and content but that does not always come easy and if I don't pay attention that contentment slips away. I have tried to figure out God's reasons for giving me POTS for years. I've asked God why over and over and it has seemed like He's ignoring me. The real problem is that I am not paying attention. It's still hard for me to see reason amongst POTS when all I can see is what I am missing and all of the ministry opportunities I am too sick to do. People have told me over the years that I am an encouragement to them and I always took it as another cliche that people use when they don't know what to say. But this year God gave me an amazing roommate who showed me I can still make a difference for God and that I had encouraged her personally. I was beginning to see that one of the reasons God gave me POTS was to encourage others, still I had not quite grasped that concept or felt that I had the ability to encourage.
    I started writing this blog because I thought venting might help me cope with this illness but after beginning to write my story I just felt it was too depressing and no one would be interested in the ramblings of a peculiarly sick young girl. Despite the encouragement from my roommates to write this blog I put it on hold. Months later I felt like it was time to explain myself to whoever would listen. Since starting this blog I have received messages, some from people I know and some complete strangers, just to tell me that I had encouraged them in some small way. Some of these people have POTS and some do not but the fact that they have taken time to let me know I have encouraged them has been extremely encouraging to me. I'm starting to see that maybe what I thought was a cliche was really God showing me that I could still impact lives in some small way.
    Last night I was crying out to God for answers. This morning a complete stranger wrote me a note telling me how my blog has encouraged them but really I was the one who was encouraged. If a complete stranger can take the time to tell me I'm an encouragement than I guess it must be true. It wasn't cliche and they had no obligation to comfort me. It was just a random act of kindness. Well, nothing is random with my God! I didn't think it was possible for me to be an encouragement but I thank God for the opportunity to be an encouragement in someones life. I hope and pray you are encouraged by what you read and that you come to the realization that true healing and contentment can only come through God. It doesn't always come easy but He guarantee's it will come.

More Doctors...

    Saw my new doctor on Wednesday. Seemed to go well, she didn't have much new to say. Finally have my appointment for the gastric emptying test on August 19th. Over the past couple weeks my stomach has handled less and less food. I can eat a small burger and feel like I've over eaten for hours or even into the next day. Hopefully this test will show what's going on. It's kinda frusterating eating small meals every few hours. I have been extra exhausted this week and I've at least had enough energy for the past few days to get ready before the nausea really kicks in. I have been wearing my stockings everyday and they seem to be helping to an extent. My doctor told me the other day that I do not have the correct compression for my stockings. She told me that if I'm not struggling to put them on then they are not tight enough. =[ I thought I was just getting stronger! lol

My nutshell...

     Today I was finally able to get ready and go to church! I put on my lovely stockings, drugged myself up and started my very long, busy day.
8:15 Woke up and got ready.
9:10 Off to worship practice.
9:35 Practiced my special music for the morning service.
9:45 Helped teach Sunday school (thank you mom for taking over).
10:45 Sunday school is over.
11:00 Service starts.
1:30 Having lunch with about 30 other people at our house.
2:30 I sneak to my room to lay down and watch Bones =]
3:30 I update my blog.
3:32 Back to Bones!
*POTS update* I ate too much and my stomach is still upset but my drugs are working so my nausea isn't too bad! It's been a pretty good day so far.
4:35 Time to sleep.
5:30 Time to wake up for church
6:00 Church starts
6:15 I get an adoring look for the most wonderful boy =]
7:00 Church is done
7:15 Sunday Night Fusion at my house=Youth group comes over, we hang out, play games
7:30 Catchphrase has begun. Amazing game
8:00 Watch the boys (and Rachelle) play 500
9:30 Connor moves Andy's car. Which was possible because he left his keys on the dash with the window down
9:35 Andy finally finds his keys...right where he left them.
10:00 Everyone leaves and I update my blog post.
10:04 Trying to decide whether I am going to eat some lactose free ice cream covered in melted peanut butter...
10:05 Going to get said ice cream =]
10:09 Eating my delicious ice cream
10:10 Back to Bones
10:55 Spending time with my God
*Today's passage* Isaiah 38 Oh how perfect! This Chapter is entitled 'Hezekiah's Illness'.

Three things we can apply to our own illness' and troubles:
1) It is not wrong to be upset. v.3b After King Hezekiah was told by the prophet Isaiah that he was going to die he cried out to the Lord and then wept. He balled his eyes out! I struggle with the misconception that crying means I am not trusting God but that is just not true. He gives us emotions along with trials because he wants us to feel the pain. Not in a sadistic way but in a loving fatherly way. We need to experience the pain in order for God to use it for good in our lives.
2) It is not wrong to ask for healing. v.2-3a & 5 Hezekiah prayed for God to restore him and in return God gave him 15 extra years. God is the great physician! He knows and understands everything about POTS. He knows what symptoms I have and how they affect me, he knows what I've had to give up, he can see what is not functioning properly without doing any tests, he never bills my insurance, I don't have to worry about a co-pay and he sees me without an appointment!
3) Hezekiah was a writer. v.9-20 Yay!! He released his emotions, frustration and gratitude, by writing down what he felt. He starts out by expressing that he felt cheated. He then said that he was troubled which I think it's safe to compare being troubled to being depressed. It was hard on him emotionally. Then he switches gears by saying 'But what can I say?' He knew there was no point to complaining and staying down. He realizes that this happened to bring good in his life 'Surley it was for my benefit that I suffered such anguish'. He trusted that God had a plan and a purpose.

11:35 I'm again blow away by God's sovereignty and power
11:37 Time to go to bed. I'm exhausted!

Acting like there are no symptoms...

    I realize I have not yet put up a complete list of symptoms for POTS so I thought this would be the perfect time. You can learn more about the affects of POTS while also learning more about why I am the way I am. Here's what I'm going to do, I'm going to list symptoms along with a comment or two and a rating from 1-10 (10 being worst) of how I am affected by each symptom. For those of you who know me you may not think of me as an actor but when have you been able to look at me and see how sick I really feel? I'm a better actor than you thought.

• light-headedness or a spacey feeling = 8
    This mainly comes on upon standing. Those few seconds where I start to blackout and feel faint-ish.
• dizziness = 3
    Sometimes watching movies where the camera moves around a lot or a lot of action.
• fainting/near fainting = 8
    I have not fainted but I have come really close a few times...those were not good times.
• dimming of vision = 4
    This really only happens when I stand up for a few short seconds.
• nausea = 10
    Nausea is by far my number one worst symptom. It's loyal, it never leaves my side.
• fatigue = 9
    Feeling too tired to get up but not tired enough to sleep. See also Frustration!
• exercise intolerance = 7
    It's hard to exercise when that is the one main thing that makes you sick. It's a balance.
• muscle aches = 5
    Who knew your muscles could ache without even working out?
• headaches/migraines = 7
    I get these quite often. The really bad ones can lead to extreme extreme nausea. Not fun.
• tachycardia = 6
    For those of you who don't know what this is it is when your heart starts beating rapidly or violently.
• palpitations = 4
    For those of you who don't know what this is it is when your heart starts beating abnormally.
• weakness = 8
    I am incredibly weak. If anyone ever attacked me I would die.
• shakiness = 7
    I can get really shaky when my POTS is bad. Even when it's not visible I can feel it.
• clamminess = 9
    Shaking hands is always awkward. Good thing I never had a boyfriend.
• anxiety = 7
    I have definitely worried a lot more since I got POTS.
• shortness of breath = 6
    I'm not sure if most of my shortness of breath is from POTS or asthma.
• mental confusion such as: brain fog, trouble staying on task, remembering, and finding the right words  to say, difficulty concentrating = 8
    The last too are the worst, and you can imagine how much I like to find the right words.
• chest pain or chest tightness = 3
    This comes and goes but it's never serious.
• Gastrointestinal problems = 7
    Not sure if it's anything real major but eating no longer has pleasure...
• sleeping disorders = 5
    Lack of sleep can instantly take my day running down hill.
• lower back pain = 7
    This is especially unhelpful when I'm too sick to get out of bed.
• excessive fatigue = 9
    I am exhausted all the time. Sitting up exhausts me.
• intolerance to heat = 10
    I can be outside for all of two minuets but even in that short time my nausea can double.
• light and noise sensitivity = 2
    As much as I love music, I love being able to listen to it without my eardrums hurting.

A little bit of the past...

    It's been a little while and honestly I've clicked on 'New Post' about 30 times in the last few days. I even wrote an entire post about compression stockings...it was boring.
    So, what to write about...I've been pretty sick for the past few weeks and around this time is where I get frustrated. I don't know if I can handle a job right now (not to mention I have no idea what city to apply in) but I need to do something. Not only for money but also sanity. I need to feel like I'm accomplishing something. I need to feel driven.
    These past few weeks have been filled by Hulu.com, Facebook, movies, itunes, guitar, scrap booking, eating, cooking, sleeping, shifting position, staring at my unclean room in disgust, wishing I had the energy and desire to be productive, and last, but certainly not least, wishing I felt...healthy. POTS isn't all bad, it gives my friends something to joke about (which I could really use right now). I realized this year with being away at college that my family doesn't joke about POTS. Now, if you know me you know I'm a joker. That's my number 1 way of dealing with things, along with silence and TV. The difference between my family and friends way of viewing POTS is this; My friends really only understand a small part of POTS and how it affects me so their response is to make me laugh while my parents fully understand POTS and how it affects me. My family (obviously) knows what my life used to be and how much it has changed. Neither of these responses are right or wrong I just wish my family could find the funny in all this and that my friends could understand the serious.
    To my friends: When I was a young child I was very energetic. Yes, it's true. I literally bounced around the house. I played T-ball but that was just a cover to talk. That's what I considered outfield, talking time (it's not like many kids hit it out that far anyway). I loved hanging out with my favorite neighbor Mr. Graham. So much so that I would sneak out of the house and run down the street to see him which of course only landed me with a spanking. I did this repeatedly. One day my mother finally asked, "You know you're going to get a spanking, right?" "yes." Thinking she was finally on to a solution she asked "Was it worth it?" and of course I replied "Yes." I was stubborn. As I got older I learned to ride a bike and was constantly riding it. I also learned that I love Soccer. My favorite position was mid-field. I ran the whole field for the whole game...ironic, huh? My favorite things to do were play with the boys. I loved cops and robbers (partially because I had a shorter 'death' time because I was a girl), riding my bike all over town, jumping on our trampoline, and exploring all I could. I was a tom-boy for the most part. As I continued to get older Volleyball became my number 1 sport. I always liked school and never had problems with my grades. I could remember everything so I never really learned how to study. Basically what I'm trying to say is that I had a very energetic, active childhood...right up until POTS.
    POTS has changed a lot about my life and although I try to stay positive there are times it has really brought me down. It has held me back from ministry opportunities, job opportunities, from seemingly doing anything producive and most of the time everything feels like a waste. Especially college. Not just the actual action of going to college but also the job opportunities it will bring. Will I ever be able to finish college? Or get a real full-time job? Can I even handle raising kids? I think about this stuff a lot and it scares me. But along with all the scares and uncertainties that POTS has brought, it has also brought me closer to my God. God has opened my eyes to see that He has been trying my whole life to get me to trust Him and I think POTS was the last straw. At first I pulled away from God. I was angry, hurt and confused but over the last few years I have slowly grown closer and closer to Him as I have learned to trust Him. My problem is no longer trust. It has now become contentment but as I have learned to trust while my world unravelled I will learn to be content whether He chooses to knit it back together or leave it a mess. Have your way, Lord.

Gastroparesis and the like...

    I am currently in the process of studying and re-learning mathematics for my assessment exam coming up. I get to take the exam whenever I feel like it which is kinda nice but could also kill me as I am slightly terrified of taking this test and now have the opportunity to put it off. I am shooting for next Monday so I'll let you know how it goes.
    In other news, I am currently dealing with tummy troubles. They have been occurring for about 6 hours now and are beginning to frustrate. I thought I just ate too much but after an hour I figured there was more to this tummy story. My doctor ordered me a gastric emptying test (which is not scheduled yet as the flighty receptionist has not called me back) which tests for gastroparesis.
    Gastroparesis: Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.
http://www.bing.com/health/article/mayo-126300/Gastroparesis?q=gastroparesis&qpvt=gastroparesis
    I have an appointment with my POTS doctor on the 11th. Her plan for the two weeks between appointments was for me to where my stockings everyday (they are a pain, not to mention a struggle to get on), drink 100-140 oz. of water per day (which has not happened yet but I am drinking about 95% more than I used to) and take a new prescription that is supposed to help ward off headaches as I get those almost daily (not too fond of pills but been doing well so far). By far the hardest thing has been drinking more water. I have to drink slowly as water makes me kinda nauseous (weird huh?), I feel it sloshing around in my stomach and I am currently considering taking permanent residence in the bathroom.
    On a more exciting note, I am planning on adding some humor to this sorta depressing blog... not quite sure what that's gonna look like as most POTS humor is not found humorous by non-POTS patients. Maybe it will make you laugh even if you don't understand. I will be expecting comments.

POTS and college...

    I am now officially enrolled in online classes through Lancing Community College! Taking classes online will give me a lot more flexibility in my schedule and most importantly help me continue my education even though I am too sick at this point to attend a regular college. I can do my classes in bed! Which is where I spend most of my time =] I am very excited. I'm not exactly sure what classes I will be taking yet, I need to talk to an advisor on Monday, but my classes will be mostly made up of GenEds. Along with adding classes to MY schedule online classes, especially through a community college, are very inexpensive.
    I started thinking about online classes when I was at Word of Life. I knew I would most likely not be well enough by fall to attend any college (My body does not respond well to a set schedule). As I was already planning on taking online classes my dad resigned from his job as Senior pastor at our church. There is now a cloud of uncertainty hovering over our family. We don't know where we will be living in the next few months as it is very likely we will have to move so my dad can have a job. God knew all of this before I did. He knew online classes would be the best thing for me in more ways than one. So no matter where we will be I don't have to worry about what will happen with my schooling because I can take it with me! Online classes are quite convenient.