over packing, hospitals, & spoons

As I continue to pack for my newest hospital adventure starting tomorrow, I, once again, find myself forgetting that I will only be there for 4 days.. not 4 weeks.
Typical girl.. over packing.
But hey, better be safe than sorry, right?

Well, as I mentioned, my newest hospital adventure starts tomorrow. I am quite nervous but part of me is quite excited to have a doctor thats finally working to get to the bottom of this all.

In the next few days I will be posting on this adventure so stay tuned.

In the mean time, I want to take the time to explain something to everyone. As you may recall, sometimes I refer to myself as a 'spoonie'. What does that mean you may ask? I'll explain.

The term 'Spoonie' comes from something called "The Spoon Theory" written by Christine Miserandino. It's quite the long read, but it's so, so worth it.
Here it is:

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino
- See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.2mXBpiJs.dpuf


xoxo,
g.p.

Catching up!

Good golly, it's been a while.

We have come catching up to do!
The last 4 weeks have been filled with so many abundant blessings. I completed my GED, got the privilege to lead a TEC weekend one some of my favorite partners-in-crime (Eth & Lish), and I got a job at Hiemstra Lawn Care in Orange City as their new office assistant.
Guys, the Lord is SO GOOD. He has been showing His faithfulness more and more every second of every day and my heart is simply awestruck.

Throughout this I've gotten a few comments such as, "Wow, you're growing up a little fast, don't ya think?" or "You just turned 18; you're too young of all of this!!"

Here's what I have to say that~

Friends, as many of you know I had to drop out of school when I was simply a sophomore in high school because of illness. I have had to and still have to suffer with knowing that I will never get to be cheering on those stands on chilly Friday nights, with knowing I will never get to go to prom with my friends, with knowing I will never get to walk across the stage to graduate with my classmates. Here's the thing; I had to grow up at a young age. I had no choice- I had to.

For years I always wished that if even for a moment, I wanted to experience a 'normal' highschool life, if only for a few hours. Last year, the Lord gifted me with a mere glimpse of what it could have been like. February 2013-July 2013 I was sent 3 very special people that, all in their own special little ways, gave me that glimpse of what a 'normal' high-school life would have been like and boy oh boy, it was great. I will never be able to thank them enough for that. As much as I didn't want it to end, those special people couldn't stick around forever. Eventually they had to go out and live their lives, too.

Slowly, my life went back to simply being 'the sick girl', and for the first time in my life, I was okay with it. You see, God gave me this glimpse of what it could have been like and that was great, but then He took me back to reality and I had to sit myself down and realize the beauty in the messed up, rollercoaster of a life that He has given me.

So, friends, yes, I agree. Maybe I am growing up, but take time to realize that this isn't a new concept to me. I am now not living an 'abnormal teenage life' anymore; I am living an 'abnormal adult life'. And that is perfectly okay with me.
I have been given a tough life to live, but I also have been given the Ultimate Healer. I may not ever be healed of these illnesses and they may hold me back from living what some say to be a normal adult life, but every day I'm watching and feeling the King of Kings heal my heart from pain of this life.


xoxo,
g.p.

So I guess I'm an adult now.

Adulthood.
So far, I have a love/hate relationship with it.

I am only a few days into being 18 and so far my life has consisted of angry courthouse visits, ridiculously long tests, too many dishes, an abundance of dirty laundry, and painful migraines. Icky, icky, icky.

But, aside from all of this ickiness, I have been quite blessed the past few days, too. I received countless emails, texts, facetime calls, phone calls, visits, and facebook & twitter posts wishing me a happy birthday from all over the world.

Thank you all for blessing me despite an icky day.

I also got some goodies. Goodies that I am over-the-moon-excited about.

Grandma Tracy made me a birthday pie. Notice, no cake. I don't like cake. Rhubarb fluff pie was much better.

Uncle Vern's gift was so great. I fell in love with this beautiful spoon cookbook/book/plate/everything stand while we were down in Kansas City a couple months ago. Opening up that package, I would have never guessed this little treasure was hidden inside. I am so excited about it! And as many of you know, spoons hold a very special place in my heart. So thankful for such a thoughtful uncle.


Also not pictured; my incredible, overly generous brother, Spencer, bought me all 10 seasons of my favorite show, Friends. And my sweet, caring, adopted sister, Lexi, has gotten me something but refuses to tell me what it is. I am currently learning patience. I don't like being patient. Bleh.


Overall, I am in awe of the blessings that continue to be showered upon me. Thanks, guys. You da best.

Dr. Jaisani & The Lord's Faithfulness

I have seen these doctor's offices much too often. 

Yesterday, Friday, November 8, I sat in a new doctor's office once again. 

As many of you know, I have had a less than desirable experience with doctors. Some don't believe I am sick, some just don't know what POTS even is. My family doctor just recently referred me to a new Neurologist up at Sanford.

Terrified, I sat in that office yesterday, scared that this appointment would be like all of the ones prior to this.

The nurse came in, asked the usual questions, took my blood pressure, etc. Ya know, the whole run down.

After about 10 minutes, in walked in a sweet little woman named Dr. Zeenat Jaisani, (try saying that 5 times fast!), and her unusually tall medical student guy. They both shook my mom and I's hand, sat down, and unlike my past appointments, Dr. Jaisani actually looked happy to be there; she looked eager to to see me. This, my friends, was a first.

Long story short, Dr. Jaisani is the best doctor I have ever been to. Here's a few reasons why:

     1) She knew what POTS was. Like, for the first time, I never had to educate the doctor; I could just be             the patient. She already knew everything she needed to know. It was so stinkin' cool.

     2) She wants to do everything she can to get me better. First doctor to every say that.

     3) She looked at me straight in the eyes and said, "There is hope." Oh my goodness.  Remember the first             part of the verse on my new tattoo? 'As for me, I will always have hope...' Hokey smokes.                           GOOSEBUMPS. 

After talking for a while, she came up with a treatment plan for me. This treatment first consists of a multitude of tests, including: lots and lots of blood tests, MRI, MRV, a sleep study, and a 3 day hospital stay up at Sanford to measure my brain waves and brain activity. I am also starting on 5 new medications. Now, as some of you know my body doesn't react well to medications. Dr. Jaisani knows this, but these are medications I have never tried and she wants to see how I react to these first. If the medications just aren't cuttin' it for me, I have other options, such as a spinal tap and a few other things. 

Like she said, this is not going to be a fast process. Slowly, but surely, she thinks this plan is really going to work for me.

Friends, I cannot express the the gratitude in my heart. The Lord's faithfulness is ever true and was made even more evident yesterday. It brings tears to my eyes just thinking about how long we've prayed for a doctor that would actually care enough to see past my 'non-sick-looking' exterior and see the pain and suffering I've endured the past 8 years. 

GOD IS JUST SO GOOD, PEOPLE.

There is a long road ahead of me on this new journey but I know The Lord's loving hand will guide me every step of the way. 

Because of the Lord’s great love we are not consumed, 

for his compassions never fail.

They are new every morning;

great is Your faithfulness.

Lamentations 3:22-23

xoxo

My Newest & Most Precious Tattoo

Hey folks. Take a look. A reaaaaaal good look. 

Everyone has some story or meaning behind every tattoo for the most part. My other tattoos are very near and dear to my heart, but this by-far is the most precious. Why you may ask? I'll tell you.

Well, as many of you know, I've been sick for quite some time now. In this time I have learned many things. I learned who my true friends are. I learned to appreciate the little victories. I learned and I felt true agony. I also learned how great our Lord is. I learned so many things. But the most important thing I learned?

Hope.

I learned hope.

During countless tears and late nights where I didn't know if I could endure the pain any longer, the only thing that remained was hope. In the middle of endless doctors appointments and hospital stays, the only thing I had left to cling to was hope. Hope, that the Lord might bless not only myself, but others though this. Hope, that maybe someday, there will be a cure. Hope, so that I may carry on.

Still to this day, that is what I cling to. And I will continue to praise Him more and more every single day; whether I'm in excruciating pain or not.

Well, there you have it.
I hope you love my new addition just as much as I do.

xoxo

6 hours a day. 7 days a week. For the past two months.

6 hours a day. 7 days a week. For the past two months.

Studying. That's what I've been doing with my life.

For 6 hours a day. 7 days a week. For the past two months.

As many of you know, I've been out of school since the middle of my sophomore year of high school because of my many chronic illnesses. Online classes weren't working for me so I've basically been school-less since then. This year I began the process to get my GED.

September 3 of this year I had my very first class. Classes are every Tuesday and Thursday from 1-3 at NCC in Sheldon. Completion of the GED consists of 11 tests. The first is the entry test, which is taken before starting any classes. This basically tests you to see how smart you are. The next 5 tests are the pre-tests. The pre-tests are in 5 subjects: Writing, Reading, Mathematics, Science, and Social Studies. These can only be completed after 40 hours of class time. After completion of the pre-tests, the 5 finals can begin. One must score at least 500 on each of the final tests to complete the GED program.

Before I started this I was told the GED is easy- junior high type stuff.

Lemme tall ya somethin', folks.
It's far, far away from anything junior high.
It's actually far from anything even high school level.

This is college stuff. And it is tough. Reaaaaaaal tough. And to pass all of those tests it's requiring me to study 6 hours a day. 7 days a week. For the past two months.

Friends, my brain is fried. Absolutely charred. But I am thankful. I am excited.

I will hopefully, God willing, be finished with my GED by Christmas, at the latest. I am almost finished with all of my pre-tests and I will be starting my final tests soon.

Continued thoughts and prayers are appreciated!


xoxo

Happiness.

"What makes you happy?"

I've been asked that question quite a bit. 

And quite often my answer is, 'I dunno, stuff.'

A few days ago I finally sat myself down and said, 'Alright Graish, you need to figure out what makes you happy.' In making this list I found that I tend to 'like' many things, but not a lot of things make me genuinely happy. I think that finding happiness in something is much more than just 'liking' something, but it is your heart finding absolute joy, complete bliss, pure jubilation.  

Here is my list of things that make my heart happy:

1) Flowers. 

As being the daughter of a florist of 12 years, I have learned to see the beauty and simplicity of flowers.

2) Antique shops/thrift stores.  

I may or may not have an obsession. 

3) Hugs. 

Being that my love language is touch, hugs are very special to me. 

4) Organization. 
Many of you know how terrible OCD I am. When all of my DVD's have been alphabetized, it's been a good day.

5) The Humane Society. 
Oh, my love for this organization is strong. I am a lover of all things animals. Kitties, puppies, all of it. Makes me heart melt.

6) Clean sheets.
Pretty sure I'm not the only one. Gotta love that crisp'n'cool feeling. 

7) Tea time with Jesus. 
Taking a little time out of the day to sit down and dig into scripture with a cup of tea is probably my favorite moment of each day.

8) Tattoos.
Already having 3, and with more to come, I've gotta say looking down and seeing such sweet memories and reminders on my skin daily is a fantastic feeling.

9) Books. 
My, oh my. My mom's love for books definitely traveled into my blood stream. I cannot count the amount of books that I own and I hope I never do. Really, though. It's scary. Books on books on books.

Now, let me ask you, what truly makes you happy?

xoxo