FYI

FYI: When you start a new medication make sure to check the side effects. If they say, may cause weight gain they are lying bastards because what it really means is it WILL make you gain weight no matter what you do. Heathens!

Plans are pointless. Staying alive is as good as it gets.

Insomnia.  It really sucks and I seem to have a bad case of it. Hopefully it will get better now that my husband is back from his business trip.

It seems that I now have anxiety about sleep. If I need to get up a certain time or have something important to do the next day I get really anxious about getting enough sleep and getting up on time. Which equates to me not being able to fall asleep which makes me worry more - vicious circle.  And that's where the insomnia comes from.

Too add to that vicious circle, if I don't get enough sleep I get a headache/migraine. Which means I need to sleep to get rid of the migraine.

Why not just drug myself into oblivion? Well, if I'm home alone I have to make sure I can wake up if the dog needs to go out. Or clean up stinky cat puke at 5:30am so I won't step in it. Or the house catches on fire. The options are endless and thus back the anxiety.

Which leads me to watching 28 Days Later sometime early this morning. No, scary movies really don't bother me. But I did hear the most interesting quote:

"Plans are pointless. Staying alive is as good as it gets."

 That's how I feel right now. I might explain why later but it's pretty depressing.

I don't look sick

 Lately I've been getting the feeling from people that I'm just not doing enough.  Not visiting enough, not caring enough, not "add your own words here." It drives me crazy because it just makes me realize more and more of how much people just don't understand. Don't understand my life, don't understand what just getting through a day takes.  

 I see a therapist once a week and a psychiatrist about every 2 weeks but talking to Reverend Tammy this week she hit the nail on the head - I don't look sick. People look at me and expect me to be like everyone else. Like I used to be. Hey, I'm not like that anymore. Everything has changed. EVERYTHING

This is me now. This what's normal for me. So I'm going to try to put into words what it's like. First read the "Spoon Theory" below. I don't have unlimited spoons, I have to work with what I got.

I sleep 12 hours a night. That's half a day. Half my day. That leaves me 12 hours to do everything else. Then if I do something very brain/thinking intensive, like driving or worse driving in the rain or traffic then I need more rest. If I exercise I need more sleep. No, I can't just sleep less because that severely impacts my ability to do anything, like my balance, coordination, word usage, talking, thinking. The list goes on.

So just a normal day, sleep 12 hours, that's half the day gone. Shower, wash my hair, get myself ready, feed the dog, let him out, check on the cats: that's another 2-3 hours. So we're up to 14-15 hours and I've not done anything.

Now if I want to drive to say Smithfield that's 1.15 hours there and another 1.15 hrs back - add another 2.5 hours to my day. That makes 16.5 - 18.5 hrs just getting up and driving down to Smithfield.

No visiting, stopping for food, gas. Oh yeah, now I get migraines if I don't eat regularly or get all my 12 hrs of sleep.

I'm not asking for your pity just understanding. Understand that I might look OK but I'm not. That I want to do more things but I just an not able. I would LOVE to be like everybody else but I'm not.

The Spoon Theory

I get this a lot - "but you look fine." How did all this affect you. And it's really hard to answer that question. I stumbled across this and it fits perfectly!

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".

© 2003 by Christine Miserandino Butyoudontlooksick.com

Could you be pregnant?

I've not been feeling well.  It started a couple weeks ago with some abdominal cramping. Then progressed to hurting when I urinated; I ignored it until I woke up several times in the MIDDLE of the night nauseous. I'm thinking bladder infection.  Figured I could walk into the Urgent care, get a prescription and be on my way.

I get there, get checked in and wait for the nurse to call my name.  I somehow get the happiest nurse I've ever seen. Not the "about time to get off and get out of here" but more like "I just won the lottery, this is my last day and I'll never see this hell hole again" happy.  It was very odd.

She starts checking me in, asking all the normal questions. She's still all happy and everything is flowing along normal until we get to the "cound you be pregant" question. I say no, my husband had prostate cancer. And I very quickly and frankly get this in return:

"Just because your husband had his prostate cancer doesn't mean your not pregant"

I was totally dumbfounded. Absolutely speachless. I was trying to figure out a woman would come in with a husband unable to have children and be pregant. Was a woman stupid enough to think she couldn't get preggers by anyone? And then what happened when the husband found out.  Was he stupid too and think it was his or was there a huge fight with police called in? My brain could not process it all. I think I finally shook my head no because she went to the next question with her over the top cherry self.

I'm still shaking my head thinking about it.

Super Glue vs Teflon

On Tuesday I changed my Facebook status to:  I just poured superglue into a non-stick pan. Someone's going to be wrong.

I had no idea people would think I was serious.  Even my Mom asked why I was putting super glue in a pan. So after lots of questions and posts I determined I HAD to actually do this as a science experiment.

If you want to place bets on who wins - now is the time.

We begin with a simple Teflon Non-Stick fying pan.

And a package of The Original Super Glue

Open the bottle of Super Glue - we all know it takes a safety pin to actually open the bottle.

Now drop some Super Glue into the Teflon Non-Stick Pan. Sorry for the blurry photo, it's the best I could get.

Now we have a puddle of glue in the middle of the pan.

Now we just need to wait a couple minutes to see which one wins!

Now let's check the pan

There, we have the winner!  The super glue is still running around inside the pan, sticking to nothing!

Here's the final picture of the Teflon still clean with NO super glue to be found anywhere!

I can confirm that the Super Glue stuck to both the paper towel and my thumb while it was being cleaned off the pan.

So there's your winner - TEFLON Non-Stick pan!

Thanks to Arianna for being an awesome assistant.

Anxiety level RED

Why is my anxiety level at RED?  Oh let me count the ways:

• Since I’m getting better I’m noticing more and more things I cannot do, which is a constant daily downer
• My left foot is hurting because it’s compensating for the weaker right side and carrying more weight, I think. It hasn’t gotten so bad that I want to go to the Doctor.
• The pollen. The pollen is driving me crazy.
• Nortel is petitioning the court to allow them to stop all the LTDs benefits

If that's not enough to raise your anxiety level, nothing will.