Walk In The Rain With Me

Choosing Joy

Saturday, March 29, 2014

"Joy does not simply happen to us. We have to choose joy and keep choosing it every day." Henri J. M. Nouwen

Joy- Intense and especially ecstatic or exultant happiness

This is what you find if you look up the word joy in a dictionary. That is the widely accepted meaning of the word. But like so many beautiful things, joy is so much more than the simple definition.

We have this tendency to believe that joy and happiness are one and the same, but I don't think they are.

See, happiness is an emotion that is entirely dependent on circumstances. When good things happen (we eat a bar of chocolate, someone gives us a hug, we find a lost thing, etc.) we are happy. But when bad things happen (the car breaks down, we get sick, we end up late to work, etc.), our happiness is replaced by frustration, anger, sadness... We are emotional beings, and happiness (along with anger, sadness, and frustration) is an emotion.

But joy... joy is not an emotion. Joy is a fruit of the spirit. It is not dependent on our circumstances or the things around us. None of the other things that are the fruit of the spirit are dependent on circumstances , so why would joy be? I mean, you won't hear someone say, "Love everyone, but if something bad happens, it doesn't really matter." Alright- you might. But we know that's not true. ("A friend loves at all times..." Proverbs 17:17. "Love your neighbor as yourself" Matthew 22:39. "And now these three remain: faith, hope and love. But the greatest of these is love." 1 Cor. 13:13...)

So many things that go on in life try to steal our joy from us- loss, suffering, depression, illness, fear, betrayal... But the Bible says "Rejoice in the Lord always. I will say it again: Rejoice!" (Philippians 4:4) God wants you to be joyful! To celebrate His love and grace and mercy. Why else would He give us feasts if not to remember the great and wonderful things He has done?!?!

I know from experience that it can be very hard to rejoice always. When you are sick or hurting, it is hard to see past the pain to recognize how much there is to rejoice about. But that's why we must fight for our joy! That's why we have to work together to remind each other of all the things we have to be joyful about- our salvation, the blessings God has given us, His everlasting mercy....

And that is why I love the new album by Rend Collective, and their video explaining the meaning behind it- because it sums up in just a few minutes everything that I have thought for a very long time!

Their whole album is beautiful, and a wonderful reminder of how much in life there is to rejoice over. How can anyone have a frown on their face while singing "My Lighthouse"? It's just not possible.

And that is also why I love the church that I and my family are a part of. Because it's not all doom and gloom. Everything doesn't have to be serious and reserved. No one frowns upon clapping, or singing off-key. It's OK to be undignified.

So go ahead. Jump up and down to your favorite song. Sing super-duper loudly. Celebrate all of the great things God has done for you! Because when you're focusing on all of your blessings, the hardship seems so small in comparison.

(Here's your chance to jump up and down!)

illness

Dear Healthy People

Thursday, March 27, 2014

"The things you take for granted, someone else is praying for." -Unknown

Greetings to all the healthy people of the world.

My name is Anastasia. I am fifteen years old, and I'm just like you, except for one thing: I have POTS.

You probably don't know what POTS is, because it's rarely diagnosed. POTS- postural orthostatic tachycardia syndrome- is a subset of dysautonomia. Because it is such a complex illness, I cannot very easily tell you what it is. However, the hallmark symptom (and the criteria for getting a diagnosis) is that your heart rate speeds up at least 30 bpm on standing up.

POTS causes a slew of other problems along with the tachycardia, such as fainting, GI issues, pain, lightheadedness, fatigue, brain fog, headaches/migraines, blood pooling, heat intolerance, cold hands and feet, loss of appetite, muscle aches and pains, and more. Life is very tough when it seems that your body is committing treason...

I look at you, and remember what it was like to be healthy. I remember all that I used to do, and I am reminded of how different life is for me right now. I think about all the things I'm going to do when I'm healthy again.

And I'll admit it. Sometimes it hurts to see everyone else doing the things I wanted to do. Especially when you take it for granted. When you do something halfheartedly that I only wish I could do full out.

I know that you cannot fully understand, because I used to do the same thing. I didn't think anything of being healthy, because (other than an occasional cold) it was all I had ever really known. It was just... normal. And I know that's what it's like for you.

But I feel like it's my duty to put this out there- health is a gift. While you take it for granted, someone else is praying for it. Someone else would do almost anything to get it. I know that you can't understand, but please try. Try to imagine what it would be like to lose control of your own body. Put yourself in my shoes as best you can.

Don't get me wrong- I would never wish POTS (or any other chronic illness) on anyone. I am so glad that you aren't going through this too, because I know how hard it is.

Just... As you go about your day, try to remember how blessed you are. When things aren't going your way, think about the many gifts you've been given. Family, friends, health... little things like chocolate. Whatever it may be for you.

Maybe the world would be just a tiny bit better if we all tried harder to recognize how much we really have...

Sincerely,
A POTSie

family

Sister, Sister!

Monday, March 10, 2014

"Sister ... She is your partner in crime, your midnight companion, someone who knows when you are smiling, even in the dark. She is your teacher, your defense attorney, your personal press agent, even your shrink. Some days, she's the reason you wish you were an only child." -Barbara Alpert

I don't watch much television- mostly because we don't actually get channels to watch. DVDs and tapes sure, but not channels. However, we occasionally decide that we actually want to watch a television series, so we go out of our way to make sure we actually do. Sometimes we invite ourselves over to people's houses to watch it on their Netflix, or even as it simply appears on the television. And sometimes we rent or buy the DVDs as quickly as we possibly can.

That's what we've been doing with Downton Abbey lately. In fact, we finished the first season just a few days ago. After finishing the season, I felt an overwhelming sense of appreciation for my sister, as well as a compulsion to be extremely nice to her.

For any of you who haven't seen Downton Abbey, I'll do my best to explain what I mean without spoiling anything for you should you decide to go watch it for yourself. (So far, it's been pretty interesting. For the most part, good story-telling, the acting is good, cinematography is good... There has been at least one scene that we skipped, but overall, it's been good, I'd say. And certainly intriguing.)

Well, there are these two sisters... They don't get along very well. And when I say they don't get along, I'm not talking just petty arguing, bickering or clash-of-wills. No, that I've seen plenty- it still bothers me to no end of course, but I've mostly learned to ignore it. No, this is taking sibling rivalry to a whole new level. Let me lay it out for you... Sister #1 is popular, so Sister #2 gets slightly sulky. This leads to #1 showing-off to rub it in #2's face, so #2 tries to outdo #1, so #1 tries harder than before and crushes #2's hopes, so #2 ruins #1's reputation, so #1 ruins #2's hopes of marriage.

Convoluted, huh? Well, that basically sums up what we've seen so far without actually mentioning any of the circumstances involved. At the end of the season finale, I was left pondering the tragic story of these two sisters, and genuinely thanking God that this is such a far cry from the relationship I have with any of my sisters.

____

Of course, I have my Kharis. My older sister. If we were the sisters in the story, I would have ruined her reputation and she'd have ruined my marriage. Terribly sad, I must say. We'd have been pretty much off speaking terms by now, and probably hated each others guts.

Which is why I am so grateful that we are not those sisters.

My sister is my best friend. She is my roommate (for now), my frequent traveling companion (in spite of the fact that I'm not always hers anymore), my partner in crime (or, rather, the mastermind behind it all), my free counselor (it comes with the job, I think), and my shoulder to cry on (sometimes). I could not have created a better sister for me. I would have tried to make her too much like me.

Some people might find that funny, because they already see us as practically twins anyways. (Ha!) They seem to be under the impression that because we have similar faces, we ought to be the same on the inside, too. That perhaps we are two cookies made from the same batch of dough.

But God never uses the same dough twice. Sure, he may use similar recipes for some of us, but we all have our own little quirks and oddities. A pinch more salt, huge heaps of chocolate chips, or a bit less flour than normal. It's what makes us special.

If I had planned it out, we would both have a similar personality- quiet, laid back, easy going, humorous, etc. Well, if I had planned it, we would never get anything done.

____

Then, I have my Zoe. Our wild child. She and I have a slightly strained relationship at the moment. We are so very different, and our needs tend to conflict. I am certain we are both to blame for the fact that we tend to have a hard time getting along.

As for me, I tend to be more irritable of late, and have difficulty letting go of things that once wouldn't have bothered me much at all. The constant strain of being sick and tried all of the time makes it very hard to keep cool in frustrating situations.

And unfortunately for both of us, Zoe is going through a phase where she seems to enjoy frustrating people on purpose. Or perhaps she just doesn't think things through before she does them. Whatever the case, my irritability mixed with her "phase" makes it very difficult to spend time together and not come away feeling very frustrated.

But in spite of the fact that we don't get along as well as we used to, we still love each other. We still have our special moments, and we still enjoy each other. We can be in the same room without arguing, and we don't purposefully hurt each other.

I am very hopeful that we will get closer as time goes on, and as we both grow older. Age gets less important as you get older, and the gap between us seems smaller each year. Perhaps then we will get along a bit better.

But even before then, I cherish each day that I have with her. Because I know that I can never get back any of the years the go by, and I do not want to waste a single one with her. Already, she has gotten so big. I remember when she was just born, and when she still sat in a high-chair, and when she was learning to read. I remember her first Christmas, and her first birthday.

And now she's nine years old...

____

Lastly, there's my Shiloh. Sweet, little Shiloh.

It seems only yesterday that she came home from the hospital, but already she's nearly two. Where does the time go? I couldn't tell you.

She has such a personality, and I have enjoyed watching her grow. She is discovering new things about the world everyday, and loves to explore. She loves to laugh, and make other people laugh. She also loves experimenting with the different noises she can make, and sometimes mimics the noises others make to her.

Every day is something new when there's a toddler in the house, and it's no different for us. I cherish each memory we make, every funny thing I see her do, and every day we have together. Someday, she'll be too big for the stroller. Someday, she'll use ALL real words.

So until then, I'm going to make the most of this time we have together. The slobbery kisses, the unintelligible conversations, and the sweet laughter of a small child.

____

What about you? What do you take for granted?....

illness

Dear POTS...

Sunday, March 02, 2014

"I'm smiling- not because I'm stronger than my problems, but because my God is stronger than my problems." -Unknown

Yes, I'm still alive.

I know, I know. Shocking, isn't it? Some days, I wonder. And yet, day after day, week after week, I continue to wake up and fight.

It feels like my body has betrayed me. It doesn't seem like this should be me at all. Where did the healthy, active, youthful 13 year old that I used to know go? And why? If anyone sees her, would you tell her I miss her? Tell her I never appreciated her enough. Tell her I'll do better this time. Tell her I've learned my lesson. Tell her I want her back...

When you have a chronic illness of any sort, it's very easy to get discouraged. People are always saying, "Hold on. Things will get better!" Sometimes, that statement makes me feel hopeful. It makes you feel happy, and encouraged. And some days, you just wonder if it really will...

That's the thing about "chronic". It means long-lasting, persistent, sometimes incurable. I know that healing is possible, and I trust that it will happen on God's time. But part of the whole "chronic illness" thing is accepting that maybe you weren't meant to be "normal." And what do you do in that event? You can choose to be miserable until you're better, or you can accept that it may not happen and be incredibly thankful when it does.

Guess which one I've chosen?

I've come to terms with the fact that maybe my plans for my life weren't God's plans. Or perhaps they're meant to come later. I've accepted that I may never get "better", and that my life may be a little different from most people's. I've accepted that my miracle healing may come some day, or not at all.

I have to.

This doesn't mean I've given up. This doesn't mean I don't have faith. This doesn't mean I don't believe it can happen. This doesn't mean I don't care anymore, or that I'm going to stop taking care of myself.

It means that I refuse to let my illness own me.

Because I am not my illness. I am not my limitations. I am not my inability or my weaknesses. This is not the end of my life, and I am not giving up. I am going to live my life as fully and completely as I am able. I am going to make the most of the time God has given me, and I am going to rejoice in the fact that I am not dying of my illness- even if it may feel like it sometimes.

Dear POTS... you don't own me.

(My new theme song...)

illness

The Unfinished Stories...

Monday, January 20, 2014

“Remember He is the artist and you are only the picture. You can't see it. So quietly submit to be painted... You are in the right way. Walk---don't keep on looking at it.” -C. S. Lewis

As a writer, I do not like stories that aren't finished. An unfinished story is so very nagging. I feel compelled to finish it, to get it over with, to finally have it done. Even if the story isn't really going anywhere. It makes me twitchy just thinking about it. Being a writer though, I have quite a few unfinished stories sitting on my shelf. I've put them there for a later date when I actually figure out where I want it to go. But it still bothers me knowing that I have left something so incomplete.

Of course, I'm that way about a lot of things. Crochet projects, for instance. Even if I physically cannot finish them (because I do not have the yarn, am in severe pain, etc.), I'm not really able to rest in peace (perhaps that was a poor choice of words) until I know they're finished. It's bothered me so much to still have a few hats that need to be finished, but I've been having trouble with my hands lately, and haven't been able to get them done, yet. Thankfully, I am so very close.

But back to what I was saying... Unfinished stories, remember?

We as humans tend to really like stories with endings. We like to see how everything works out for everyone's good. We like to see the wonderful affect it has on all of the people involved, and how it has made them better. We love seeing the purpose, the resolution, the redemption.

You can witness that in a lot of different situations, especially in Christan circles. Everybody loves to hear the story about the miracle. The woman who's healed of a disease, the house that wasn't foreclosed on, the job that was saved... We love to hear about someone who finds God through their grief, or becomes a believer because of a traumatic life-experience. We love verses like Romans 8:28. "And we know that God causes everything to work together for the good of those who love Him and are called according to His purpose for them." We like to see the reason for our pain and sufferings.

But what do you do with a story that isn't finished? We all know what happens when God heals. But what about when He doesn't?

People do not want to hear a story that has no ending. An unfinished story. But sometimes, God doesn't provide a miracle. Or at least, hasn't yet. This situation is still being worked "for the good of those who love God," but it's a little hard to see where it's going until you're there.

I am currently waiting for my miracle. Waiting for the "Go; let it be done for you as you have believed." You know, sometimes I just look up at the sky and say (mentally, most of the time), "Hey, God! I'm down here! I'm still believing! I know you can heal me! I trust that you will do this, so... what are you waiting for? Go ahead. I'm ready!" My life has been suspended indefinitely in the messy middle.

It's hard to read stories like the one about the centurion's servant being healed. You see that he was healed because his master believed that Jesus could (and would!) heal him. You read that the servant was healed "at that very moment". So many people believe and pray that God will heal me- so why hasn't He? I know He can- so why doesn't He?

One young lady said, "I really appreciated one of Seth Haines' posts which said that often the way we talk about prayer makes it seem as though God's goodness is contingent on the happy answer to prayer. 'X is healed - God is good!' 'This has been provided - God is good!' But can we say 'this sucks - God is good'?"

God is good, and God does heal, but God isn't only good when he heals. God is God (and still good) even when life is terrible. When everything is falling apart... God is good. When my health is failing... God is good. When the sky is falling down... God is good. During the unfinished story... God is still good.

And yes- even when it sucks... God. Is. Good.

A big thank you to Tanya Marlow over at Prodigal Magazine who wrote an article titled "When God Doesn't Heal", as well as the quote included in my post. You can read her article HERE. I really appreciated what she had to say, and it was very encouraging and thought-provoking.

friends

We May Not Understand Each Other, But...

Saturday, January 18, 2014

"Just because you don't understand it doesn't mean it isn't so." -Lemony Snicket

There are a lot of misconceptions about POTS and other invisible illnesses. People don't know what we're going through, because they can't see the affect it has on our bodies. It's not something you'll just notice about someone you see on the street. If you're never told, you may never even realize if someone you know has POTS.

One of the most common misconceptions about POTSies (and a lot of Spoonies in general) is that we are lazy. That we're not trying hard enough, or that we choose to sit around all day moping, or that we don't want to get better badly enough so we aren't doing everything we can. And most of the time, there is nothing further from the truth.

Probably one of the most frustrating things to be told is that you "just need to get more exercise." Now, in no way am I trying to downplay the effects exercise can have on improving your overall well-being, or in its importance in managing dysautonomia. But saying that we "just need more exercise" implies to us that we're lazy, that our suffering is our fault, and most of all, that you don't really understand what we're going through.

Because POTS is not laziness. POTS is not lack of exercise or motivation. POTS is not a need for fresh air and sunshine.

Do you think that because I don't go to an office every day, or wake up at dawn-thirty to catch the school bus, or walk four miles every day, that I just sit around do nothing all the time?!?! Do you think I'm stubbornly refusing some "life-altering" treatment simply because I'm lazy?!?! Do you think that my life is easy because I'm home so often?!?! Do you think I want to be home all the time?!?!

No.

I know you can't understand that I sometimes physically cannot do anything but sit. I know you can't understand, because I couldn't understand either. Until I experienced it. Until you feel such complete physical exhaustion (which I hope you won't for a very long time), you can't understand. But just because you don't understand doesn't mean it's any less true.

It's hard to say that we can truthfully understand the sufferings of another. On the one hand, it's not as though our lives have been all fricasseed frogs and eel pies. We've had our share of hard times and difficult circumstances.

And yet, you cannot truly understand the depth of someone's pain unless you've walked a day in their shoes. Unless you have personally gone through what they have gone through, you cannot ever understand. Unless you have experienced a very similar ordeal, you cannot understand what it does to them.

But that doesn't mean we cannot understand that life is hard. I may not know what it's like to lose your father or mother, but I do know what it's like to hurt. I may not know what it's like to have cancer, but I do know what it's like to be sick. I may not ever have had to move away from your friends, but I do know what it's like to feel out of place.

We have empathy for things like pain, loss, and fear, because we have experienced them in our own way. And though they may not have been the same for us, that does not make them any less real.

So, no. You cannot understand what I am going through. And I cannot understand what you are going through. But I know that you have suffered in your own way. I know that I'm not the only one hurting. So even if we don't entirely understand each other, I can care for you anyways. I can bear with you anyways. I can pray for you anyways.

I can love you anyways.

That's the kind of love that only God can give through us. The ability to love someone you do not even understand....

"Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you. And over all these virtues put on love, which binds them all together in perfect unity." Colossians 3:13-14

growing up

Looking Back and Looking Forward

Sunday, January 05, 2014

“Around here, however, we don't look backwards for very long. We keep moving forward, opening up new doors and doing new things, because we're curious...and curiosity keeps leading us down new paths.”-Walt Disney

Another year has come and gone, and a new one awaits us. 365 (now 360!) blank pages are waiting to be filled in.

And around this time, we not only look forward to a year that has yet to come, but also the one that has passed. For me, it's been... well, it's been a pretty life-changing year. Definitely not one I'll soon forget. So much has happened, and I've definitely grown and changed from the person I was at the end of 2012.

I am amazed at how blessed I feel, in spite of all that happened this year. I've spent a lot of this year being sick or tired, with numerous doctors visits and tests. There have been a lot of tears, a lot of pain, and more than a few nights that seemed much too long.

I look back on the girl I was at the beginning of 2013, and I can only wonder at how much I have changed. Some of you adults out there might laugh, but when I look back on who I was, I feel so very old. I feel like I'm about five years older than I was, not just one.

Yet in the midst of all that, there was also a lot of laughter. There were smiles. There has been beauty amongst it all. I've just learned that, sometimes, you have to look harder to see it.

This year has helped me learn how to recognize and appreciate the happy little somethings in life. New journals. Moments spent cuddling with your mom. Cloudy days. Songs that make me smile. Eating and not feeling sick afterwards. The sound of rain pitter-pattering on the windows. Checklists of things I actually did. Red hair. Reading a book. Combat boots. Having the chance to help someone else. Watching movies with your dad. The whole year was filled with little (and not so little!) miracles.

And so, even though my year didn't really go the way I had planned, I am happy that it happened. And also happy that it's over. I am ready to move on in my life. I know that things probably aren't going to be instantly fixed, but I also realize that no matter how bad things get, there are always things to be thankful for. There will always be a happy little something to find joy in. You just have to look hard enough.

(This song pretty much sums up 2013 for me.)

fear

When All You Have is Fishes... Part 3- Overflowing

Tuesday, December 31, 2013

"Another fresh new year is here . . .
Another year to live!
To banish worry, doubt, and fear,
To love and laugh and give!" -William Arthur Ward

We are finally coming to the end of 2013. Usually, I feel a certain amount of sadness at the passing of another year. One more year that's passed. Another year towards the end of my childhood. But this year, I feel nothing but relief. Relief that the year I felt would never end... finally is ending.

2013 has been a really rough year, for me. Being sick has been very stressful, even beyond just feeling bad. It puts such a strain on your heart, mind, and just your overall being. So this year, I smile at the thought that it's finally over. That perhaps next year will be better.

But I don't really want to write this post about being sick. I'll save that for next time. Right now, I have something much happier to talk about. Because 2013 wasn't a complete washout for me, and there were things in it that make me smile. My little sister, Shiloh, had her first birthday. I made it into my first Quo Vadis play- and as the part that I wanted, too!

Another thing that became a huge part of my life this past year, is my Living Water Hats mission. It started back at the end of 2012, as just a little idea in my heart and head. The first time I ever mentioned it was on October 25th, when I wrote an article about if for our family newspaper. At the time, I had no idea how long it would take, or what to expect. Plus, I didn't really know where to go from there. I knew that I wanted to raise $1000 for a Jesus Well, and that I wanted to sell crochet hats as my way of raising money, but that was as far as I had gotten.

Well, time passed, and I got older, but I didn't forget about Living Water Hats. I sold a few hats, but most the money that ended up in my the envelope was simply what I put in there from my paychecks every week.

My biggest stumbling block in selling my hats actually had to do with the fact that I felt like my dream was very small, and I saw people doing much bigger things. People who also needed donations, and had a "more important" cause than I did. People at church were going to Honduras for a mission trip, and someone else was actually moving to Honduras for a year. How could I take attention away from those things, just to sell my little hats?

But after a while, I finally felt like God was telling me that I needed to follow Him, even though I felt like it was a small thing. So I wrote a blog post about it. (You can read that, HERE.) My main goal in writing that was to remind people that the gifts God had given them weren't small. I wasn't really thinking very much about the fact that anyone who read that anyone who read my post would hear about my hats. I just wanted people to know that they had something to offer, too.

But people did hear about my hats. One person in particular. The worship leader at church, Mr. Matt, read my blog post and wanted to help out. He approached me about it the Wednesday after I published the blog post, saying that he wanted to help me tell other people about my hats, as well as purchasing one.

I was amazed at how God had used my blog post. Even if the conversation we had may have seemed like a small one, it was a milestone for me. It had me nearly in tears, and I don't cry. I was so moved by it that I ended up talking about it on the stage in front of the whole church.

And that was when it completely exploded!

I cannot explain how it all happened, because it is beyond explanation. It is too great and wonderful for the confines of the written language. Too huge for my human mind to comprehend.

On October 2nd, nearly a year after I first started Living Water Hats, I finally reached $300. At this point, the goal was still to have the well fully funded by January 1st, 2014. I knew, vaguely, that God can do anything, but I most definitely wasn't holding my breath for it. It wasn't really that I didn't think it could happen, just that I didn't think it would. By the 20th of October, I had reached $400. On November 2nd, I passed $500, which was the half-way mark. On the 14th, I only had $530. But somehow, by mid-December, I had $700.

And now, two days before the goal-date... I have not only achieved my goal, but SURPASSED it! When we counted everything in the envelope, including the mountainous pile of change at the bottom, I had $1,030.73!!! Just like in the story, the baskets are now overflowing...

My mind is still reeling from the sheer chock of realizing that I went from $300 to over $1000 in the span of two months. Two months!!! The only was this could be explained is by giving credit where credit is due- to God only. This isn't my well. It's God's well.

And God has certainly taught me a few things through this whole journey. Firstly, He has taught me that no dream is small when God has given it to us. He has given each of us a dream. And it doesn't matter if you're not called to a foreign land. Not everyone is supposed to go to Honduras. But that doesn't mean your dream is small. That doesn't mean it's nothing.

Secondly, I have seen that God uses even the most unlikely vessels. I'm certainly not what I would think of as being the prime candidate for raising a thousand dollars. As sad and hard as it is to say, I am no longer the picture-perfect teenager I used to be. I went from being in the prime of health to being "like an old person" (in the immortal words of Nate) over the span of just a few months. My health has gone downhill very quickly, and we got my diagnosis not too long after Living Water Hats really started to take off. I wasn't sure I was going to be able to keep up with the hats, because I just feel so tired sometimes that even crocheting is more than I can handle. And honestly, I know I could never have done this on my own.

I guess that's why God so often uses people like me- who are too small, too sick, too broken, too whatever. Because we cannot even begin to claim that it was us who did it.

Thirdly, I have been reminded to never underestimate what God can- and will!- do. He is so much bigger than we give Him credit for. We have a tendency to try and fit God in a box. We try to make-believe that we understand everything there is to understand about Him. And then He goes and does something like this. He reminds us that He is infinitely bigger than even the biggest box we have. Just as He isn't limited by time or space, He isn't limited by our abilities, our failing health, our past, or even our lack of faith. Things that would trip us up do not even come close to touching God.

He can take your fishes- your three hundred dollars- and use it for so much more than we can even dream of ourselves...

__________

I would like to thank everyone who has helped me reach the goal of $1000 dollars before New Year's Day, 2014. There are too many people to thank everyone by name, but there are a few people I would like to mention here. First off, Mr. Matt, whom God has used to spark the whole thing off. Mr. Todd and Mr. Emerson, who have been super supportive and helpful in getting the word out and getting my Facebook page started. Also, the whole Youth Group at Four Winds Church, who have been amazingly supportive and encouraging. And lastly, my mom, dad, and older sister, who have been there from the beginning.

And, of course, God- who has given me all of these amazing people, and without whom I would not be here.

family

Words from a POTSie- Pt. 3

Saturday, December 21, 2013

"The joy you bring us is so much greater than the sadness we feel about your illness." -John Green

I have said already (both HERE and HERE) that illness is hard. Both of these posts were focused on how hard illness is for the sick person. But illness is especially hard on the family as well. It's so very hard to see people you love hurting, and knowing that you can't help them is even harder.

In my last post, I did a list of Ten Tips to (and from!) a Spoonie. This time though, I wanted to do something a little different. So here you go...

Ten Tips to (and from!) a Spoonie: Family & Friends Edition

1. None of this is your fault. Just as we Spoonies shouldn't blame ourselves for our illness, you can't blame yourself for our illness, either. Nothing that you did or didn't do for us has made us like this. We just are.

2. We are hurting... Please remember that we don't want to be this way. All of those times when we don't unload the dishwasher like we should? As strange as it may sound, we probably wanted to. We want to help, but some days we just can't. And that hurts us even more.

3. ... but we know you're hurting, too. Sometimes we have a hard time showing it, but we know this is hard for you, too. We know we're not the only ones who are struggling through this.

4. Have a life. Please don't let us and our illness keep you from living. We know you have a life apart from our problems, and we want you to experience it. We want you to have fun. We want you to keep doing the things you enjoy. So get there and do them!

5. Know your Spoonie-speak. We Spoonies say "I'm fine" a lot, and it's always a lie. "I'm fine" is Spoonie-speak for "I'm not really fine." Because when we're really fine, we don't use words like fine. We use words like "great" or "really good." Also, "I need help" is NOT an over-exaggeration. "I need help" means "I REALLY need help!"

6. Please don't be afraid of us. Yes, we can be very needy, but please don't let that drive you away. We still want to be your friend, and we still love you just as much as we did before we were sick. Please don't worry that you'll damage us in some way. As fragile as we may seem, we're made of tougher stuff than you think.

7. We know you have problems, too. You might be tempted to hide your problems in the face of what you see us going through. Please don't. We do have our problems, and most days they are more than enough, but we know we're not the only ones suffering. We know you have issues that are unrelated to our illness. And it's OK to tell us about them. It really is.

8. Sometimes, it's best not to ask. It's so very hard to answer the question "Are you feeling better?" In truth, we usually are not. Or if we were, we would tell you first. So most times, it's just best not to ask. If you really want to know how we're feeling, ask. But don't ask if we're "feeling better", because we know you want to hear the word yes.

9. We need you. We could never do this without you. You are an integral part of our world, and we cannot imagine it without you.

10. You are amazing.

We cannot fully express (and you cannot fully comprehend) just how grateful we are that you're still here. That through every doctor's visit, through every bad day you have been there. Not just everyone can do what you do. Not just everyone knows how to love someone who is so very broken. But you do. And for that, you are amazing.

illness

Words From a POTSie- Pt. 2

Thursday, December 19, 2013

"A healer is someone who seeks to be the light that she wishes she had in her darkest moments." -Vironika Tugaleva

I was diagnosed with POTS. It's not something I'd ever heard of until a few months ago, and unless you have or know someone with POTS, you probably don't know too much about it, either. So here's something you should know- being sick is hard. It's hard on your body and on your heart. And it often feels like you're the only one in the world who feels this way, since you're often the only one in your world who feels this way.

Because of how rarely diagnosed POTS is, a lot of POTS patients get most of their information and encouragement from blog posts and online resources. I know that I have several POTS related blogs I like to follow. I'm not sure whether or not anyone with POTS will ever see this or not, but it applies to pretty much any chronic illness.

Here is my list of

Ten Tips to (and from!) a Spoonie

1. None of this is your fault. Unlike some illnesses, nothing you did or didn't do caused you to be like this. There wasn't anything you could have done to prevent this. It just is. Do not blame yourself for your illness.

2. Remember that your illness is small... This isn't all there is to life, although many times it many feel like it. This is just a small thing in the big picture. Things may not ever miraculously be fixed, but it won't always be this bad. There will be good days, too.

3. ...but it is also very big. The impact this has on you isn't small. It may not be terminal cancer, and it may not be life-threatening, but that doesn't make it any less important. It is a big part of your life, and likely will be for a while.

4. Don't try to do this alone. You need people in your life to help you get through this. You need people to remind you when you forget to take your medicine. You need people to explain what's happening when you just can't figure it out. And sometimes, you just need someone to sit and watch a movie with you when you feel like you can't do anything else. Find someone.

5. Don't be afraid of being vulnerable. There is nothing wrong with opening up to someone about your life. It's such a relief sometimes to just talk to someone. No pretenses, no mask, no "I'm fine" when you're really not. Sometimes you just need to tell someone how much you're hurting. Do it.

6. You don't always have to be strong. You won't always be alright. And that's alright. It's OK to not have it all figured out. It's OK to be "not so great." There are just days like that.

7. Don't forget to live. Sometimes your illness may seem to just take over your life. With medications, doctor's visits, and new home remedies to try, it's very easy to forget that there's a life out there that doesn't have to revolve around your illness. You may not be able to just toss your illness to the side whenever you please, but make sure you don't let it rule you. Get lost in a book. Watch a great movie. Write a journal (or blog) entry that doesn't mention your illness.

8. Remember the good 'ole days. Don't forget about what your life was like before your illness. It may be tempting to think about it as little as possible because it makes you remember all that you don't have anymore, but sometimes you really need to remember that there was a time before all of this started.

9. It's OK. Remember that no matter how big your illness may get, your God is bigger. And because of this, you can look your illness in the face... and laugh. Just laugh. Because it has already been defeated for you. Everything will be OK.

10. You are not alone. No matter how lonely it may feel in the world of chronic illness, you're not the only one. There are people who truly understand, and there are people who may never understand, but they'll still stick with you through it all. Through every bad day and every new medication. You are not alone.

So there you have it. Ten Tips to (and from!) a Spoonie. If you don't understand the reference there, please Google "The Spoon Theory". It's probably going to be at the top of your search engine.

Be sure to pass this along to any "Spoonies" you may know.

Choosing Joy

Dear Healthy People

Sister, Sister!

Dear POTS...

The Unfinished Stories...

We May Not Understand Each Other, But...

Looking Back and Looking Forward

When All You Have is Fishes... Part 3- Overflowing

Words from a POTSie- Pt. 3

Words From a POTSie- Pt. 2

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