Saturday, January 18, 2014

"The spoon theory"  So exactly Spot ON!! Everyone should read this, send it to family members, friends.
If you are sick but it is not readily apparent, hell I was BALD and people didn't realize (or think) I was sick!
I don't know what it is, I guess you just become really good at hiding the pain.. I don't need sympathy, I would just be happy with some damn UNDERSTANDING!  I know its long.. just take 5 min.. read it and share!

The Spoon Theory….

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”.
© 2003 by Christine Miserandino Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free link to “The Spoon Theory” at – Thank you!

Wednesday, January 8, 2014

Tired and sad. Angry and mad.

There are these weird days when I just feel alone. I don't know if it is a shift in my meds (I cut a few out) or if it is just the crappy weather. I'm equal parts sad, angry and just feel alone. I am making efforts to make the changes I need to make to feel better for me and about me it is just such a slow process when I want instant, easy results. SOL tells me that it is going to be hard, and it is going to suck most of the time.. he is right and it doesn't help!
 I've been having a terrible time holding my rage in.. I just about ripped the  Pharmacy Tech a new asshole because instead of letting me know my scripts where ready they filed them and neglected to call my name as I sat there for an extra 15 minutes.  Its not as if I had any where I needed to be at that moment it just really made me so mad! Why bother with the huge "WAITING" on the damn info sheet stapled to the front of the bag  if they are going to fucking ignore it???
My family is driving me Between #1 not helping with bills but having plenty of money to do whatever she wants to do and #2 with her head in the clouds I am just about ready to pull my ridiculously STILL curly freaking hair out of my head.. I don't even want to think about the 30 times a day my sister calls.. to whine and annoy me even more.
So much BS is going on with the band I am not sure if we are ever going to play again its just the one stupid asshole screwing around with the way things are, "lets all fix what is not broken."
dumb ass
. I'm tired of feeling this way, tired of not being happy. Tired of feeling like everyday is too much of a struggle to get out of bed. Tired of trying to figure out how I am going to pay the bills without an income and no job prospects on the horizon. I'm tired of the pain in my heart and in my body and I am honestly not sure what to do to pull myself out again.
I'm just so tired.

Monday, December 16, 2013

HEY you!! YEAH you! Self righteous bitch!

First Go here! Read this!

Omg.. When my kids were babies I struggled with Breast feeding.. With my oldest,1,  my milk was leaking out at 5 months pregnant. I seriously was cutting maxi pads in half to soak that shit up.. most of the time I ended up with a wet shirt but it lasted longer! Anyway, the night she was born after a horrifying C-section and near death experience, my milk "came in" with a vengeance.... My breasts swelled up like watermelons about to burst...OMG PAIN. And I was already on narcotics!  Anyway the nurses got really really hot cloths put them on my chest until the flood of milk, and I started breast feeding... while on narcotics... as you can imagine this did not work out well.. She would fall asleep 5 minutes in, I assume from the mouthful of PERCODIN she was ingesting!! (Oh! And I found out later, the nurses were giving her “supplemental” formula in the nursery!! No wonder she wouldn’t eat!)  But I kept trying, and the Le LEACHE psychos kept bugging me.. I mean I don’t know about you, but the way I was raised you do NOT let a stranger grab your bare breast and squeeze the fuck out of it… STRANGER DANGER!!!!  So after a leisurely 9 days in the hospital I was sent home, 20 yrs old with a newborn and huge breasts with which to feed her…and narcotics.. Thank God for my mom! So 2 nights later, my boobs have once again swelled up and are hard as rocks, I can’t get the baby to eat.. my mom is out.. and I start to hallucinate… Breast Fever… ? .. Had no idea THAT could happen!! My temp when my mom got back an hour or so later was 105… IDK what happened but she fixed it.. and I gave up on breast feeding about 2 weeks later.. back then “88 you just went to your Dr and they gave you a shot to dry up your milk.. But those Stalking Le Leache psychos continued to call me sometimes twice a day to get me to “reconsider”!! I finally got them to stop calling when I told them I was going to call the cops for their harassing me.. I mean seriously I was already freaking out, had post partum depression.. “baby blues” we called it, the last thing I needed was these people making me feel like the worst mother alive for stopping breast feeding!

After the second kid, 2,  4 years later I was a little more prepared. Shut the Le Leache bitches down the first day, ended up breast feeding for 5 almost 6 months.. till the driving need for alcohol was answered!! Honestly? I did feel a bit superior to all of those Formula feeders! I was sucked into the hype.. I was a better mother because I was breast feeding!! HA! Looking down my nose at them, I tripped over my own foolish feet and realized that no matter how I did it, I was the only thing my kids knew and no matter how I fed them, I was doing it right. Well, unless you count that time I put the Pepsi in 2’s bottle cus she would leave me alone… Hey I was at the good part of the book!
My final child,3, was a shock. I was expecting to be able to do this again, hands tied behind my back No Problem… LOL.. Did you know that  boys are different than girls in EVERY way????? Thank you  S-I-L JA who answered my every panicked call no matter how late… Breast feeding lasted 3 weeks… And I did not give a rats ass who thought it sucked.. I NEEDED BEER! And to not have a kid hanging off of me every waking moment….
No matter if you Breast Feed or do not IT IS YOUR BOOB!! Tell the busybody’s who think they know it all to FUCK OFF or better yet hand your screaming kid to them and say “if you know so much YOU DO IT!!”, ok that one should probably be reserved to people you actually know… omg if a stranger said something about my breast feeding or lack thereof,  I would have punched them!  
Turns out I got Breast Cancer anyway so THAT myth is debunked!
 And to the blog that caused this blog…THANK YOU!!!   


Monday, September 23, 2013

And again.

So why is it that with all of the abilities and resources we have, we fail as a society to protect them?  “In some ways I think the American Dream is a problem – there is an idealization by many Americans of how ‘great’ the country is – this then makes it challenging to raise some of the not so great realities into public focus. Maybe we should talk less about being great, the land of the free, etc., and more about tackling some of the serious issues that plague children’s/people’s lives?”- Patrick Tomlinson

Another friend has taken her life and I'm not sure that I can get through this in any kind of respectable manner.  I want to scream and yell and blame everyone and her. Everyone because we didn't see the lie in her eyes when she said she was feeling better and we would all get together "soon".  And at her because she let the darkness take her. 
I miss her so much, I wish she had called out to anyone when it got so bad. she knew. she had already planned it to the final detail. My heart hurts.

Thursday, September 5, 2013

Don't ever forget, they could be gone in a moment.

I lost a very good friend yesterday.
 I can’t stop thinking about how senseless this all is. He knew he could get treatment, but he wasn't willing to give up any part of his life to be sick.
 I admire that, but I miss him just the same.
 He had the balls to grab life by the short hairs and run with it. He had a great 2 years, and did just like he told me he would; he “lived until he died”. 
 I will always remember our jokes and how he always told me the way it was. He didn't sugar coat anything for me, if he thought I was wrong he told me so, and he also told me why.
 And he always, always, had my back.

RIP my friend, I hope we meet again.  I love you!