You Just Have to WANT It

"You just have to WANT it."

That quote is from a real estate show on HGTV called Hawaii Life. I'm choosing to apply it to my life rather than dreamy homes in paradise. I have a big list of WANTS that may not have the best odds in the eyes of a realist. My life is a testament to miracles and unlikely situations though, so I'm diving in head first. I'm ready to fight with all I have for my "wants", my dreams.

I want to have a baby. I have come to terms with the fact that I won't get to carry that baby. I get that. I understand that it's going to be a tough road and IVF will be incredibly hard on my body. I understand that there are risks and that my doctors have concerns. I also understand it is expensive and will be stressful. I believe though. I have faith. I have hope. I am optimistic. We believe. We have faith. We have hope. We are optimistic. Lee and I are the strongest team and we are ready to fight for this baby that we already love.

I want to teach. I want to brighten the lives of students, families, and other teachers. I want to embark on things in the classroom without concerns of weakness or illness. I want to be me without being ashamed of revealing medical realities that might make others uncomfortable.

I want to enjoy and support Lee and his basketball team. I want to go to the games and be a helpful supporter of the team.

I want to participate in things - things I enjoy doing. I want to cook, clean, go to concerts, take Jackson to the park, make friends and spend time with friends.

I want to do what is right for my health. I want to accept my limitations and be at peace with the things my body needs. I want to live fully with no regrets.

Simply put, I want it all. We want it all. Together, I know we are going to continue to live beautifully. :)

Why you gotta be so rude?

"Sticks and stones may break my bones, but words will never hurt me."

I can actually remember the day my brother taught me that old saying. I also remember thinking he was an idiot and totally wrong. I was right. ;)  (well, he's not an idiot, but that saying is soooooo unrealistic) Words hurt, words REALLY hurt, and I would say for people with the love language of affirmations the sting of words might even be a little stronger.

Let's be real. People say unbelievably stupid things all the time. Deep down, I like to believe that everyone's intentions are basically good. I like to believe that sometimes, people just don't know what to say but have the overwhelming need to say something. I know I've done it for sure. I know that words have flown out of my mouth that I immediately regretted. I also know I've hurt people with words without knowing it. We all do it, but it still sucks. It's annoying and unfortunately, the impact of words often lingers a lot longer than physical pain. Phrases that seem harmless on the surface can really take a toll on someone who is already down. 

"You don't look sick" 
"You have a positive attitude so things must be great"
"Maybe God didn't intend for everyone to have children"
"God only gives you what you can handle"
"Oh, I had that ____. It wasn't such a big deal"
"Have you gained weight?"
"Have you lost weight?"
"Just take a day off and rest, then you'll be all better"
"It must be nice to just lay in a hospital bed and do nothing"
"You look awful"

It seems petty to be bothered by words. Especially when I know those words often come from a sincere place. I feel like I have gotten pretty good at letting things roll off my back over the years. Sometimes, though, words just hurt. I want to be more intentional with my own words. Every person is dealing with something. I always try to keep this in mind. No person's "thing" is bigger than any other person's. Our past experiences dictate the impact of future experiences. I believe the good I can reap from my pain will help me to lift others up in theirs.

The 500 Club

FIVE HUNDRED! FIVE HUNDRED! FIVE HUNDRED!

What a huge milestone! I am so excited to report that my peak flow reached 500 today! This is incredible! I am so excited, proud, overwhelmed, and thankful! It feels so good to see and feel true actual improvement! 

As big as this news is in my own, internal world of celebration, Lee made it even more special. When I told him I could see in his eyes and his reaction that he genuinely felt what a big deal it is. I didn't need to explain anything. It was just as big for him as it was for me. It took me by surprise and swept me off my feet. It is beyond wonderful to have someone in my life who completely loves me and feels my victories and losses as strongly as I do. I am more thankful for his love every minute. Fighting is so much easier with him by my side!

Sharing The Spoon Theory

I don't know Christine Miserandino, but our bodies certainly have a lot in common. I am sharing her eye opening theory because it sheds light on what it is truly like to fight through a regular day. I don't want anyone to experience the fight we deal with each day, but I do appreciate how she painted a picture that somewhat depicts how even good days are a battle. Thank you, Christine for putting into words what I and so many others could not.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

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.u7eTzo2r.dpuf

nervous

11:51 pm
the same as 3:00 am for me on a normal night
this isn't a normal night though

I've actually become quite the sleeper and I love it. I'm thankful for each night that I drift off to sleep at a remarkably early hour. I think of it as making up for all those sleepless years. Another sign of progress on my journey toward being well.

this clearly isn't a normal night

I'm wide awake. My mind is racing. I've tossed and turned. I've read and I've showered. I finally realized....... I'm nervous. I can't sleep because I'm nervous. I also realized there's something really special about how I'm feeling. I'm filled with that true, all for good kind of nervous feeling. I realized that every thought that has been racing through my head is.... good - hopeful - faith-filled. I'm not worried. I'm not upset. I'm not sad.

I'm just nervous.

I'm anticipating the "good" I believe is coming.

Today, I had my first set of labs drawn since Dr. Olson switched me over to prednisolone. For the first time in ages I'm looking forward to Nurse Rebecca's call. I catch myself hoping she'll call early. I feel completely hopeful that she'll have good news. I truly believe this medicine is working and my eosinophils will be normal. I just know it will be a good call and we'll get to take the next step toward enrolling me into Dr. Wechsler's IL5 drug study. I'm hopeful.

My appointment with Dr. Minjarez was also changed today. They found an opening for me this Wednesday. Seriously, this Wednesday. No need to wait a full month to see her. In less than two days we'll have more information about our road toward growing our family. I almost lose my breath when I think about it. I feel so nervous, so hopeful, so faith-filled.

All in all, I'm actually okay with the fact that I'm wide awake tonight. I'm soaking it all in. I'm thanking God for carrying me through and for having a purpose for me. My life is a gift.

Nervous just means I care.

a sluggish heart

I'm obedient. I'm a pretty good listener too. That's why I'm not worried (or offended) that Dr. Fenster called my heart sluggish today. I completely trust him. I'm alive today because God so strategically placed him in my life four years ago. That gives him the freedom I to call my heart names and then tell me not to worry about it. "Let me figure things out, then we'll deal with it." That's all he had to say. I'm on board and I'm really not going to worry.

Honestly though, I can be "not worried" but still not like the situation. That's okay, right? He and Dr. Olson have had some "concerns" about some of  my recent test results. Apparently my heart is being weird and they need to investigate. For now, that means wearing a holter monitor for a week and trusting them to take care of the rest. Heart monitors stink. Yeah, I know, there are so many things that are worse, more painful, and more invasive that I could have to go through. Of course I'm thankful it's just for a week and not a month. Seriously though, it stinks. I'm not looking forward to it. I don't like it. I don't want to wear it. I'm not going to like it. I'm obedient though. I also am not about to give up this fight. Soooo, I guess that means I'll be getting a lovely new accessory from National Jewish in a few days. I'll follow the directions and I'll continue doing what I do until I hear from Dr. Fenster.

I know it will all be okay.