Friday, September 30, 2011

A New Day

First off I want to apologize to everyone who may have read the article I posted "The Spoon Theory" before I edited it. I thought I had edited out the cuss word in it but apparently I hadn't and I apologize for that and it has now been edited out.
So glad that today is a new day and not only that but the start of the weekend! Yesterday was a bad bad day. I didn't feel good from the moment I got up and my emotions were pretty much out of control. Being in pain is terrible. It's a horrible horrible thing to feel like your dying and there is nothing anyone can do for you. But in the end I see it as it's only hurting me, when my emotions are out of control, that's when it hurts everyone else and that's when I feel like disappearing for a while. I'll admit yesterday I was completely out of control, I had the worst emotional day I've had in a longggg time. By the end of the day I locked myself in my room so I couldn't make any one's day worse. Feeling out of control is one of the worst feels there is. A lot of times you feel like your watching yourself become someone else and your just looking through a window and there is nothing you can do to stop it. I hate that feeling worse then anything. I hate hurting the people I love and I hate feeling out of control so those two together gives me quite a bad day. I tend to beat myself up over it for a while after I've had a day like yesterday. I know that my hormones are completely out of whack since I haven't had any treatments in over a month but I want to feel like I have more control over my own body but the fact is I don't. I have to remember to let go and move on to the next day and make today better then my yesterday. Today is a new day, I'm feeling better and not so out of control. The weather is gorgeous, the sun is shining and fall has officially arrived!!! :) Don't you love how God starts everyday off with beautiful sunshine, reminding us it's a new day and His mercies are new every morning.
When you feel like your on the other side of the glass watching yourself and your wondering where that person came from just remember, you are stronger then you feel, and tomorrow is a new day♥

Tuesday, September 27, 2011

The Spoon Theory

Finally! Finally someone explains what it feels like. Of course cause my disease is different then the authors some of her symptoms are a little different but in the end we have all learned to hand it the same way. Thus the Spoon Theory. Check it out!

The Spoon Theory
by Christine Miserandino
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; 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”.

Sunday, September 25, 2011

The Tender Hand of Jehovah

Today I learned something that has changed my perspective on everything. For the past three, almost four years since I was diagnosed I have asked one question more times then I can count, "Why?". At first it was "Why me?". I didn't understand why I had to be the one to have to fight this battle. I didn't understand why I had to be the one to live over 95% of my life in constant pain. Over the past year it changed to a simple "Why?". Why was I going through it? Why was God putting me through it, what was the purpose? After the past few months since my body rejected the ninth treatment we've tried I've really been struggling with it. The pain has intensely gotten worse, my immune system has weakened, and at the end of the day I feel like crying myself to sleep and never getting back out of the bed from just the energy and pushing it took to get through the day. I can't tell you the times I've thought "I just can't go on. I don't have the strength." Anyone that fights this disease knows what I'm talking about because it's indescribable. The only thing that I've ever came up with to rightly describe it is think of someone lighting a knife on fire and then slowly digging into your side and gutting you. (Yes I realize that's a totally gross morbid description but trust me when I say there is no dramatizing there.) To have shots or a pain killer to get through everyday life is not a fun way to think of spending the rest of your life. So I've cried over and over Why? For so long it's felt like I've been banging my head against a brick wall getting no where. A few weeks ago I was crying and I told my mom that I didn't understand. I had cried out to Him for years to heal me, I had begged Him to give me the faith I must be lacking because I haven't been healed and I didn't understand why I was going through it. It seemed so pointless to think of spending the rest of my life dealing with the daily issues. But my Why got answered today. During service this morning my pastor was talking and he said something that really struck me. He said "Sometimes we see thing that seem cruel and hard and battles we don't understand but it's just the tender hand of Jehovah leading you." It's like a light bulb went on at that moment. In the Bible Job had done nothing wrong, and yet God allowed Satan to tear his world apart and leave him with nothing. To the natural eyes that seems so cruel that God would allow everything to be taken from him. But God did it to show how strong Job was. He was showing Job how strong he was. He had a purpose in it. So the answer to my Why wasn't that I didn't have enough faith or that I had done something wrong. It was simple. The tender hand of Jehovah. It's been God all along showing me how strong I am. How strong He is through me. He's put me in a place that He knows takes strength and fighting but that it also puts me in a place to constantly remember to look at Him. He has literally laid me on my back so I'll remember to go to Him for my help. Knowing that there is no cure and nothing anyone can naturally do what else can you do but look to Him? I know I haven't always handled my frustration right. I've made a lot of mistakes because I've gotten so frustrated and depressed about it but I'm just thanking God today that I now know that even if I never get my miracle that there is a purpose through it. I know that God is using it to keep me close to Him, to mold me and shape my character, to give me compassion for other people, and that He's using it to bring His imagine in me. So I shall say the one thing I never thought I would say about this disease, I'm thankful. If He thinks enough about me to give me an incurable disease to keep me close, then He thinks I'm strong enough to take it and who am I to tell God something is to hard? Nothing is to hard for God.
So my friends as you face your battle of getting out of bed to face another day tomorrow just remember, there is a purpose. You may not see it now but I promise you, God is using it in your life in ways you can't even imagine.
Much love and tender wishes!

Thursday, September 22, 2011

A Little Bit Stronger

Do you ever feel like everything just piles on all at once? I sure do. I'm scheduled to go back to the doctor in a few weeks. My pain levels are high again, my breathing is hard and my emotions are as back and forth as the oceans tide. Up one moment, down the next. So more hormone therapy may be up next, or surgery..although I am going to ask her about physical therapy. I've heard that helps a lot with the pain that comes from scar tissue that's left behind after surgery. Sometimes I get so frustrated cause it feels like no one understands. I get frustrated when going out in the yard to throw a ball around with my brothers causes me to be in bed for three days, I get frustrated when my weight is up and down constantly, I get frustrated when I start getting dressed and realize that my stomach is so tender to the touch I can't wear something that is touches it. Sometimes it feels like you wanna stand up and scream "I'm not strong enough". But then you get up, you face it and every time you crawl out of bed to face another day you become a little stronger.