Sunday, April 29, 2012
Somehow tonight we got on the subject of tattoos. Now I've wanted one for a while now. Just a small one. Something that has significance to me and have it somewhere where I see it and not everyone. I've been looking around for one for around a year. I want something along the lines of a symbol for hope, strength, or endurance Just as a reminder to myself to never give up. The things holding me back are the money, finding something I love...not just like since it'll be there for forever, and of course the biggest one being I don't know how or if my body would handle it with the whole Lupus situation. Being on prednisone and blood thinners isn't the best combo for tattooing. I have found a couple I really like and if I can remember how to paste pictures I'll put them on here. They're West African Andrika symbols and they're meanings and the symbols and beautiful. The heart one stands for hope and faith and means "By God's grace, all will be well" and the fern stands for endurance and has no special meaning other than "fern".
Amongst looking for this special tattoo or tattoos, I stumbled across a sight that had pictures of matching best friend tattoos. So naturally I think that's a really cool thing and would totally do it. I don't even have one yet and I already want another!! I would get something with Mike too to symbolize our commitment to each other since we can't get married but I'm almost positive he would never go for it. The other 4 pictures are friendship symbols. The infinity sign is the one on the wrist. I kind of like the infinity sign sign that's made to look like a ribbon, it could be made purple for Lupus :). The symbols on the fee are a variation of the infinity sign and I think it is my favorite.
Seeing as it is 5:30 in the morning I should probably at least try to sleep.
Tuesday, August 23, 2011
I'm just going to be generic and repetitive and repost this note I wrote on facebook :)
As most people know by now, I have Lupus. However, most people don't know exactly what it is let alone understand what I go through. And as my friends all know the only thing I hate more than people feeling sorry for me is people judging me when they don't understand my situation. A friend had this article on their page and it explains the daily struggles with Lupus better than I could ever hope to. I'm not trying to make people feel bad for me by posting this, that's the LAST thing I want. Like it says in the article, I would just like to help people understand some things, like why I can't drive a lot and why I rarely go out.
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
Tuesday, December 7, 2010
I think these are all good reminders about life that everyone could use...I know I sure can ;)
Sunday, September 6, 2009
Friday, July 17, 2009
*Going to air shows and the air field...he loved planes*
*Going to get ice cream whenever we got the chance*
*Going to the Talmage Store to run errands*
*Gathering worms in the early morning to take fishing*
*Going fishing in the creek by my grandparents house in Cali*
*Watching him play pool in our basement for hours....he was soooo good*
*Going fishing in the canal up on our top property and dangling our feet over the edge*
*How much he loved cinnamon rolls*
*He'd always toast his marshmallows over the coals, so they'd be perfectly golden brown...no black. To this day I do mine the same way*
* He loved Wendy's Frosty's...actually he loved ice cream in any way, shape or form :)*
* He always told me how beautiful I looked....even when I thought it was a big fat lie...lol*
* He never let anyone leave without a hug and a kiss*
*He loved my grandma soooo much...even though she was crazy and yelled a lot lol*
*He had a great sense of humor...like agreeing with me that grandma was crazy :)*
*He never complained about anything...even though Parkinson's took away almost everything he loved to do and had him trapped inside that body*
*He was a Patriot through and through. He loved this country with all his heart*
I'm sure I could sit here all night and think of many, many more memories of Papa. Those were just a few I wanted to share with yall. I love my grandpa very much. He's a very special man and I miss him dearly. I'm sure as time goes on it will get easier, but for now, his memory is still fresh and the pain is also. I'm also attaching his obituary that my mom wrote. It's really beautiful and I don't know how she had the strength to write it honestly.
I love you Papa and I'll see you again someday...I promise
Gibson, Robert E. "Bob"
Aug. 8, 1926 ‹ July 4, 2009 MONTROSE ‹ Robert E. "Bob" Gibson, 82, of Montrose, Colo., passed away July 4, 2009 after a hard fought battle with Parkinson's Disease. Zella ,his loving wife of 58 years, and his daughters were by his side.Bob was born on Aug. 8, 1926 to George and Theda Gibson in Belle Fourche, S.D. He moved to the Redding, Calif. area as a child, and it was there he graduated high school. Shortly after graduation, he joined the Navy and served during World War II and again during the Korean War. He was a retired truck driver and an avid fisherman. He took pride in making his own fishing gear. Bob and Zella loved to travel in their trailer and they took many wonderful trips throughout the United States and Canada, until his illness prevented his traveling. They raised their family and worked in Ukiah, Calif. for 43 years before relocating to Montrose, Colo. in 1994. Bob was a very kind and patient man who dearly loved his wife, children, grandchildren and great-grandchildren. He didn't complain about anything, not even the weather. He was a lifetime member of Ukiah Elks Lodge 1728. He was a member of the Montrose United Methodist Church. His family will miss his quick wit and wonderful sense of humor.He was preceded in death by his parents; brothers, Jim and Bill; his sister, Shirley; and one granddaughter, Katie Hardin. He is survived by his wife, Zella; his daughters, Sharon (George) Tinaza and Valerie (Steve) Hardin of Montrose, Colo.; his brother, Willis Gibson of Igo, Calif.; six grandchildren, Heidi (Ty) Holman of Castle Rock, Colo., Shawn (Jamie) Hardin, Ben (Michelle) Hardin, Holly Hardin, Emily (Andrew) Repynek and Timothy (Kristin) Tinaza all of Montrose, Colo. Also surviving are eight great-grandchildren, Kelsie, Cailey and Brittney Holman, Kai, Devon and Gabriel Hardin, Tyson Tinaza; a step-granddaughter, Emani Baltazar; two aunts and numerous nieces and nephews.A memorial service will be held Tuesday, July 14, 2009, at 11 a.m., at Crippin Funeral Home Chapel. At Robert's request, cremation has already taken place. Donations may be made to Hospice and Pallative Care of Western Colorado, P.O. Box 1804, Montrose, CO 81402. Arrangements are under the direction of Crippin Funeral Home and Crematory, 802 E. Main St., Montrose, CO 81401 (970) 249-2121.
Thursday, July 16, 2009
Everyone concentrates on the problems we're having in this country lately: illegal immigration, hurricane recovery, alligators attacking people in Florida. Not me, I concentrate on solutions for the problems. It's a win-win situation.
+ Dig a moat the length of the Mexican border.
+ Send the dirt to New Orleans to raise the level of the levees.
+ Put the Florida alligators in the moat along the Mexican border.
Any other problems you would like for me to solve today?
Yes! Think about this one:
2. The Constitution
3. The Ten Commandments
C O W S
Is it just me, or does anyone else find it amazing that during the mad cow epidemic our government could track a single cow, born in Canada almost three years ago, right to the stall where she slept in the state of Washington? And, they tracked her calves to their stalls. But they are unable to locate 11 million illegal aliens wandering around our country. Maybe we should give each of them a cow.
T H E C O N S T I T U T I O N
They keep talking about drafting a Constitution for Iraq . Why don't we just give them ours? It was written by a lot of really smart guys, it has worked for over 200 years, and we're not using it anymore.
T H E 1 0 C O M M A N D M E N T S
The real reason that we can't have the Ten Commandments posted in a courthouse is this: You cannot post 'Thou Shalt Not Steal,' 'Thou Shalt Not Commit Adultery,' and 'Thou Shall Not Lie' in a building full of lawyers, judges and politicians...It creates a hostile work environment.
Tuesday, May 26, 2009
I'm so proud to say that my grandpa and dad served in the military to keep us safe here and keep our way of life.
I intended to write more about what's going on in my life but I'm falling asleep finally so to be continued...