Here's a few more pictures:
Friday, May 28, 2010
Thursday, May 20, 2010
Phew…just thinking we survived this makes me sweat! No, Ronny and I cannot say NO to things…especially important family events!
Last weekend, we started our adventure and headed to Fort Collins, CO to celebrate with our sister-in-law, Heather, who was graduating with Veterinary Medicine degree! She has put in lots of long, hard hours and she deserved this special day. She has an internship for the summer and is looking for a full-time job.
We stuck around for lunch, then jumped in the car and headed to Kansas. We actually were unable to attend Ronny's cousin Billy’s graduation from K-State (BS in Animal Science), but we spent some quality time with Grandpa & Grandma Pope, who live in College Station, TX and don’t get to see a lot. But we’re super proud of Billy and got to visit with him the weekend before! Billy actually spent the entire spring semester in Costa Rica on study abroad. You can see view his blog here. He is interning with a dairy in Seneca, KS this summer, then will be headed to Michigan State in the fall for grad school.
After a short day at the Pope Ranch, we headed back north to Nebraska to my cousin, Megan’s graduation from high school. She actually graduated on Sunday, but her party was Saturday and a great time to see lots of family.
Megan will be attending UNL in the fall and planning to major in Speech Pathology. Even though she’s the ONLY grandchild not attending K-State (wink wink Meg) she will be very close to me! I’m hoping for some fall lunch dates. ;)
After our long weekend, on Sunday night we then went to a Seward Young Couples dinner…no slowing down for us! I’m still catching up on sleep…zzzzzz.
Wednesday, May 12, 2010
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”.
Tuesday, May 4, 2010
Ronny and I took a little vacation this weekend (took advantage of a holiday exclusively to Nebraska – Arbor Day with Friday off) and flew to Nashville, Tennessee. We didn’t get to see much of the city, but drove by the Grand Ole Opry, so that certainly made our day!
Our friend, Matt, who went to grad school with me, now lives north of Nashville and was going to the same wedding we planned on for our grad school friend, Cora, in Paoli, Indiana. So he graciously let us stay with him Friday at his way cute cabin just north of Nashville in Franklin, Kentucky. I can’t believe how many trees were there and how curvy and hilly the roads are! So we cooked out with his friends and girlfriend, Nicole – who goes to Vandy – and even shot off some fireworks. :)
On Saturday, we made the trek to Paoli (NW of Louisville) for the wedding. We made it just in time and just as the rain stopped for the wedding. Here is our grad school friend, Robin, who was a bridesmaid. I love the purple dresses and beautiful flowers!
Everything is green there and The Ranch was a great location. :)
French Lick is actually a little famous place that Al Capone used to come and stay…aka hideout. The Walnut Lodge on The Ranch was built in 1919 from Walnut logs as a private retreat and hunting lodge for Ed Ballard, hotel and casino operator. The old lodge had a beautiful arrangement of furniture like iron beds, oak desks, a huge dining room table, and game room that Capone used to stay at and people can still stay in it now and we ate breakfast there with the family.
All the locals didn’t know why it was called, French Lick, and it really made us giggle. Then these firemen showed up to make sure the barn was to code…and they had French Lick on their sleeves. So I tried to sneak a picture. :)
When in Manhattan, we would join in with the Line Dancing Club, which I blogged about here…so of course we had to dance to some Copperhead Road!
The rest of the wedding was great and we were the last ones to leave. :)
! Coming home the next day was an adventure for sure. We knew it would be raining the whole drive back to Nashville, but didn’t know HOW much rain!
This was the view from the air…I wish the other pictures turned out because there were several roads and buildings under water. We were blessed that Matt got us to the airport just before they closed the road to the airport….by the time we got to Nashville, there were several other roads closed in the southwest part of the city. Our plane was delayed and we had to catch a different plane, but finally made it back to Omaha at 10 that evening.
What a wild adventure…but I was just so glad I got experience it with my hubby!