Sleeping October away...

I have slept most of October away...not sure what is going on with my body....but something is not right...

So I will keep on going to all the doctors and take all the tests to see if they can figure it all out....

I have no clue...because all I have been doing is sleeping October away...

LOVE, LOVE, LOVE Her :)

She is our Ashley....

Raising him right...

My teenager....

He is moody...

He is ornery...

He is soulful...

He is wise...

He challenges me every day...

BUT...

When his life becomes more complicated than mine....

I couldn't ask for a more amazing teenager!!!!!

New camera...

My family rocks! They knew my camera broke and I was saving money to get it fixed... but like most money I save...it goes to something that the kids need or something that breaks in the house or the mom van... So I thought I would show off some new pics I took with my new AWESOME camera from my always INCREDIBLE family :)

My Birthday...

I have some of the most AMAZING people in my life that made my birthday the BEST ever!!!!!!

The good old days...

G

G-A

G-A-H

G-A-H-S

How 4 letters can take you back....

I definitely get it now...

Raising a teenager is a new level of parenting... You are constantly challenged... Negotiations are pushed to a new level because they have had 13 years to find your weaknesses... They have more influences from peers (and most of the peers you would prefer them not to be around)... They have mood swings.... They are self conscious about their body changing...

All the while, I try not to scream constantly... I try to get him to open up to me about anything... I try to have him set long term goals... I try to support him and his dreams.... And most importantly...embarrass him in front of his friends....

Thanks dad

The traveller...

I have another job to add to my list:

The Traveller...

because I would travel anywhere to see my baby play!

Ready...

Ready to send them off to school....

4th grade for Sylvie

8th grade for Anthony

Today...

I spent the day getting lost in my book....

Finally caught on...

My wonderful children have been shuttled around to amazing family and friends because I have started back to school...

They text me and call me to find out when I'm picking them up because they "miss me so much!"

When REALLY they are saying :
Will you come pick us up so we can go home to play with our friends....

Hmmmmmmmm.......
I finally caught on to the TRUE meaning of "we miss you so much!"

Reading my body...and listening...

Today I am listening to my body.... I have been working in my classroom (trying to get it ready to start school in less than 1 1/2 weeks)...this involves climbing and squatting and walking all over the place...plus playing taxi for my princess and the teenager...

So basically trying to wear my Superwoman cape....

It took 2 "Spoons" to walk downstairs to make my pot of coffee... I was awake...so I'm not sick...just VERY sore joints and muscles... To describe it for you... I felt like an 80 year old woman walking downstairs...

SO.... today I am making myself rest in bed and watch movies...entertaining myself also with facebook and solitaire...

I may not like it...but like I tell my children (the ones I gave birth to and the ones I teach).."You don't have to like it...you just have to do it!" :)

Remnants of Sylvie...

How do I know my princess has been in the room?

She leaves a little something behind every time she walks out of a room....kind of like what she does to everyone's heart after they meet her....

Floating like a butterfly....

My life is starting to spin out of control....that is because I have to go back to school in 18 days...


Most do not realize that it is like starting a new job each year for teachers....you have 24-27 new little faces that are unlike any other child you have taught before....And you have to get to know all of them...and their parents....
This is also the time where I begin having nightmares about everything that could go wrong in the classroom...Plus I had to organize coverage for my two amazing kiddos...which is complicated because the teenager has football practice every day 8-10am....Plus I'm going to teach a different grade this year....so you are probably saying "She must be nuts to go through this...."

...then I remember to float like a butterfly through all of my complicated crazy chaos..

Making memories...

I remember going to Deep Creek Lake and Big Bear Lake every year for the Sisler family reunion...

I remember my dad and uncles trying to take apart the pontoon for hours...trying to make it go faster...(true story)

I remember roasting marshmallows...making smores....playing with cousins...

One day, my kiddos and I will remember this week with family :)

Pure bliss...

Some people would walk into Sylvie's birthday party and think...."Complicated, Crazy, Chaos" (which it was...)

But all I see is pure bliss :)

Tired...

Some days, I wonder why I am so tired...

A princess was born...

July 6, 2001...

New Tradition

Anthony and Sylvie have always begged to go to Red White and Boom...the ex always said no...and I agreed...because when I was in high school, the tornado sirens went off during my first red white and boom....so needless to say, I had a little bit of a traumatic experience...

So my friend Angie suggested we go with her new husband and kids this year...

It was so easy to get in and out of downtown...where we watched the fireworks were perfect. She told me she has been going there since she was little...

So the kids and I have a new tradition...Red, White, and Boom with the Stevenson's :)

Feeling better...

because this is what I did today...
+made coffee
+took baby Charlie to baby story time
+took Syl to the library
+addressed all of Syl's birthday invitations
+mailed out Syl's birthday invitations
+picked Antman up from football
+had lunch at Jenn's
+went to the grocery store
+unloaded dishwasher
+made dinner
+washed some dishes
+picked Antmanup from Jenn's
+gave twins a bath
+picked up 8 bags of mulch and 10 bags of topsoil at Home Depot
+mulched flower beds
+made a new flower bed
+changed filter on furnace
+showered
+empty all trash cans in the house
+took out trash
+went to Walgreens to get allergy medication for Syl
+plucked eyebrows
+updated blog

All in a days work ;)

MIGRAINE....

This was the first weekend in a long time that I had nothing to do when the kids were at their dad's... So I thought I would do ABSOLUTELY NOTHING :)
Which was great...until the migraine set in Saturday evening... (I tried to finally go completely off prednisone... my body has a very hard time doing that since I am on it so much.)
This migraine was BAD... sensitivity to light, throwing up, can't move, etc...

My goal is to get off prednisone completely during the summer... I will reach the goal...just not this week...because I have to go back on for the headaches/migraines.

Definitely unique...

Today I went to the PRIDE parade for the 2nd year in a row.... This is an excellent display of humans expressing themselves! Everyone was so unique...no two the same... kind of like teaching... I have never taught 2 kids that were even similar. They are all so different in many ways. It is one of the reasons why I am so passionate about my job... knowing every child is different...and letting them know it is okay to be different...

Today was wonderful... hanging with friends... and seeing that there was so much support for uniqueness today... I even saw a poster that said "I Love My Gay Son!"

Own little worlds...

I talk about how I am in my own little "Keena World"...but so are my own children...well, not in my world...but in their own little worlds...

The "teenager's world":

No concept of time...

Struggles to problem solve a simple task such as go in while I'm fueling the mom van and buy 2 bags of Trolli candy...

Loses everything under the sun...

While on his itouch, he sings and plays games out loud...while his headphones are on...

Tries to boss his sister constantly...

Wants to be upper management in the house...

Every time he is asked to do something, the responses are "I'm tired" or some type of argument...

Wants to explain all strategies of his video games...

My "princess's world"

No concept of time...

Wants to please, but wants to do her own thing...

Drama, drama, drama...

When asked to do something, has resulted in modeling her brother's responses...

Does not want to clean anything up...

Has to dump everything out to view everything (and not clean it up)...

Irritates her brother, then screams/cries/whines when he gets her back...

More drama, drama, drama...

So when I'm suppose to keep my stress levels down...having 3 different worlds under one roof makes that VERY challenging for me...

Not just a back cracker...

When I went to the chiropractor today... I tried to go in with an open mind. (not with my preconceived notions of Chiropractor=Back Cracker)

Boy, I hit the jackpot!

He has a holistic approach...

not just cracking...but a natural well being...with exercise, diet, and health. I even have to take a wellness class. He listened to everything I said...then told me that I was the one who had to listen to my body...and to tell him what my body was saying. Plus, he gave me his cell number in case I was in severe pain this weekend. He even had me set goals of what I want with my overall health!

I don't think I have ever experienced someone like this...

[As you can see from my pictures... my new chiropractor is the opposite of the pictures ;) ]

The BEST part is that my pain is getting better!!

Pain....

"Pain is a pain in the butt." -Antman

Pain is consuming.... (it consumes my thoughts, my energy, my world)

Pain is overwhelming.... (it causes me to lose it)

Pain can control.... (it feels like it is controlling my summer vacation)

Pain needs to leave my body!!!! (headed to the chiropractor tomorrow)

Maybe...

Maybe I should have stayed home and cleaned my house....

Maybe I should not have danced so much Friday night with Angie...

Maybe I should not have eaten 2 fudge cycles last night...

Maybe I should not be on my 2nd latte this morning...

Maybe this, maybe that...

Maybe I should just live life how I want to...each day...each hour...each minute...each moment...

No regrets :)

Clean up crew...

While Princess Sylvie was busy as a bee helping everyone clean up at Kae Avenue... The teenager was hard at work ;)

Answers...

So I called my amazing doctor to see if I could get an earlier appointment...and of course she worked me in...

I walked in with all my test results from the ER...and I left with some answers...

My SI joint (aka my left hip joint) is inflamed....then I showed her that it pops when i bend and straighten it... She prescribed some meds to calm my hip down...then off to physical therapy.

Today I am feeling very lucky to have an AWESOME doctor who figures things out!

(BTW...the joint between #1 and #2 on the left side)

ER

And another trip to the ER with some type of unknown pain... After many tests (all coming back normal), they think it is muscle related... so off to my amazing doctor next to figure out what exactly is going on and develop a plan...

With all of this crazy chaos, I am blessed with amazing family and friends!!!! When I had to spend about 9 hours at the ER, Lindsey picked me up and hung out with me. My dad drove over to hang out with the kiddos... The ex relieved my dad... Sister J relieved Lindsey... Sister L kept calling and texting to check on me... Friends sent texts of support and encouragement!

When you have Lupus, you need a team to help you survive and cope... Your team keeps you positive... Remember, you are never alone...but you do have to reach out for support! :)

Almost done...

I haven't been posting because it is the end the year...my school year. This is what teachers refer to as being "burnt out"...so imagine being a burnt out teacher with lupus and being a single mom... yep,you've got it! That extreme fatigue is set in... I did get a second wind... I'm switching grades next year. After 10 years of 3rd grade, I finally get to move up to 5th. I'm so full of many feelings....excited, sad, scared, happy.... time for a new adventure :)

The Greatest Show on Earth...

I took the kids to the circus last night. It was AWESOME! There is so much going on at once....

Then I stopped to reflect... that's EXACTLY how everyday is for me! so much going on... I don't want to miss a thing!

It's a good thing my two gems make sure I am informed of EVERYTHING the other one does... you may call it tattling... I call it "making sure I see my own Greatest Show On Earth!!!" :)

Haircuts...I win!

When you take something simple as getting a haircut and apply it to my small family of three...you add complicated crazy chaos. Apparently no one wants their hair cut...except me. So the first argument was with Princess Sylvie... when she realized she was only getting her dead ends trimmed and she could still grow her hair long...I won!

Anthony was a different story... I waited until 10 minutes before the haircut (at the orthodontist) to tell him his hair needed trimmed. He took a poll of everyone at the orthodontist office to see if his hair really needed cut. He argued with me because he wanted to grow his hair out longer for the summer...and that I wasn't going to make him... He argued with the stylist about how he wanted his hair cut...she told him he was not 18..so his mother was in charge....so again...I won!

But how does something so simple as a haircut turn into to complicated negotiations???

Good genes ;)

All worth it...

So many people ask how I do it with divorce... How do I stay positive, friendly, etc... with everything I have went through? I guess that's just me... I work my best in a positive, friendly environment. ( In my own "Happy Keena World") So enjoy this tidbit from Anthony's birthday that makes my "Happy Keena World" all worth it...

I sent a text to the ex inviting he and his girlfriend out to dinner for Anthony's birthday. We also all went together to buy him an ipod touch (since the one I bought him at Christmas was stolen.) We enjoyed sushi and talked football, American Idol, sitcoms, and such.

When Anthony and I had a moment alone, he tells me "Mom, not many divorced parents would invite their ex to dinner, let alone their girlfriend... but you did. I just wanted to tell you thank you and that I really appreciate that you did that..."

As tears filled my eyes and my heart swelled with pride, I knew it was all worth it :)

Pushing through...

When the pain is so bad that I want to curl up in bed.... I just push through!

When my legs are so swollen from steroids that I can't even bend them... I just push through!

When my stomach swells and aches from all of the gastritis pain... I just push through!

When my clothes won't fit because of the swelling... I just push through!

When my face swells and everyone stares... I just push through!

When my daughter worries because she's afraid I'm going to die... I just push through!

When I have this moment of weakness where I feel sorry for myself... I just push through!

Life is more than pushing through for me... at times it feels that way... but I am stronger than that! Having a lupus flare tests me on my mission try to be Super Woman.... It's like the song "Ain't nobody gonna break my stride... Ain't nobody gonna hold me down...OH NO! I just gotta keep on movin"
(Okay, the grammar is killing me...but the idea is there :) )

Team work

Everyone wanted breakfast this morning...but since I'm having a lupus flare, I do not have the energy to provide a breakfast or get dressed to go out to breakfast... so our family relied on teamwork.

Antman was in charge of making scrambled eggs and getting out the condiments... Syl was in charge of slicing strawberries and tomatoes, and setting the table... I was in charge of making tea and bacon...

It was a delicious, healthy breakfast in the comfort of our own home. I have incredible children who know how to support me and love me through all of my aliments!!!!

The BEST sisters EVER!!!!!

When I was growing up and someone was sick, my mom would always make tea....because she said tea will make you feel better. So for lunch, Sister J came over and made me some tea. Then after dinner, Sister L came over and made me some more tea. And magically today... I feel so much better...

I guess our mama raised us right :)

I have the BEST sisters that anyone could EVER ask for!!!!

What a deal :)

So Sister J brought me lunch today...China Express... house low mien...absolutely delicious...plus we had enough left overs for dinner tonight... another bonus!!!

So Sister J and I made a deal... If I would finish making the twins' birthday invitations (which I added a little extra something that made them perfect), she would clean up my house.

Since I have been in bed for 4 days and I LOVE crafts, I said "Heck Yeah!"

My doctors increased some of my medicine and I'm finally feeling some relief!

Let's hope this continues...although my dad says "hope is not a plan!"

5

5- is how many times I have had a coughing attack today...(I'm so over being sick!)

4- is how many times I have called or been called by doctors today...(again, I'm so over being sick!)

3- is how many pills of steroids my rheumy increased me to...(still...over being sick!)

2- is how many kinds of candy Nichole put in my bag of sick remedies... (She made my day!!!)

1- is my son's track meet I'm missing right now...(being sick really stinks!!!!)

Spring Break Plans...

I had Spring Break Plans to clean, organize, relax, visit...but after some visiting with family...I'm sick...REALLY sick...I guess I don't do things half way...do I? It started with the stomach flu...layered with a sinus infection...and topped off with some respiratory issues... (good times)

And you know it's my life...so add the complicated, crazy, chaos... My kids were sick too... But now they are better, but I'm still in bed.... and my biggest fear is that my layered sickness is too much for my body to handle...and I'm scared that I'm going to flare...

Now for the positive...at least I'm really sick when I don't have to take a day off work.

March 29th

This day is a bitter sweet day for me...

Today is the birthday of my 1st nephew...who just turn 2 decades old. He's such a character and a stinker (even to this day)...but I love him to pieces!!!! When he was little, I used to take is binkie...to get it back, he would have to give me a hug, a kiss, tell me he loves me, and tell me that I was his favorite aunt. Every time I tortured him, he would comply because he knew I would always play baseball with him or watch "Charlie Brown Christmas Special" a million times (because it was his fav.) So today is a sweet day because I celebrate his life :)

Today was the day I lost one of my closest sorority sisters...we pledged Chio and Pi Sig little sis together... She was really like a sister to me... the week before she died, she came to my apartment because her mom was really sick. I skipped class because I knew she needed to talk. She confessed that she didn't think she could handle her mom dying...she told me she wasn't as strong as I was (I had just lost my mom 5 months before the conversation)... ironicly a week later, she was killed in a car accident... her mother had to be the one who had to be strong enough...that is my bitter....

Life is full of bitter and sweet... I choose to be sweet :)

One more thing...

In a life of complicated crazy chaos...there is always something melting down. I say melting down and not going wrong because most times the "things going wrong" end up with something going right...there is always a silver lining to every situation.

And when things melt down too much...I always say (like you do as well) "If one more thing goes wrong, I'm going to lose it..." And guess what...another thing goes wrong...and I don't lose it... so I say again "If one more thing goes wrong, I'm going to lose it..." And the vicious cycle continues...and I never lose it...so why do I say it?

Not sure...I haven't figured that one out.

feeling better

Thank goodness I have a wonderful rheumy... We realized I am completely and utterly stressed out at work. Well more than the normal usual crazy, complicated, chaotic stress. Things keep getting added on and changed...by the week. (even by the day sometimes) Apparently, the stress was/is more than I could handle. I wonder where the odometer is in your body when you have exceeded your stress load...oh that's right...my odometer was called extreme fatigue.

Luckily I have two amazing kids who help their mommy when she doesn't feel well...they never hold it against me...they never get mad if i tell them I have to lay in bed instead of playing a board game or taking them to the movies...they just supply me with extra hugs, kisses, and love so I'll feel better... I am truly blessed!!!!

My favorite place...

After a doctor visit yesterday to my rhuemy, I still feel as tired as I did this weekend... Just more tests and trying some new meds...still scary because there is no answer to calm my worried mind. I feel that if I at least know what I'm dealing with, I can research and find some "all-natural" remedy to give me energy and make me feel better...

Luckily I have two wonderful kids...
They are willing to massage my back, hands or arms all the time, clean a little more than usual, say nicer things to each other, and hang out with me in bed when I don't have the energy to move...which is why my bed has become my new favorite place... My sweet darlings make popcorn so we can watch movies together... They snuggle and tell my how much they love me... We laugh and giggle... With all the money in the world and all of the places in the world...my bed is my favorite place to be :)

the unknown

The unknown in my world can be scary at times... Here is why I'm a little scared... I'm going on 1 1/2 weeks of the extreme fatigue. I have learned there is always a reason for my fatigue... I woke up with some energy this morning...so of course I tried to do as much as possible...it just landed my in bed for the rest of the day by noon... yesterday, I spent the majority of the day in blankets and pillows... Right now it hurts just to type the keys on the computer...

LUCKILY....I have the cutest middle school boy ever!!!!!

Usually his humor is sending me over the edge...but today, as he is giving me my 2nd massage, he asked how I was doing. I explained how I have no energy to get out of bed, but I can't sleep. He responded "That sucks... maybe you have laying-in-bed-syndrome..." My belly hurt from laughing so hard...

So the unknown is tolerable when I have my wonderful son around...

Cookies for breakfast

I have been out of commission for a while. With lupus, a battle I face is extreme fatigue. To better explain what I mean exactly... I was without 2 to 3 of my regular spoons a day.... aka NO ENERGY. All my energy was spent on getting up, going to work (which has been EXTREMELY complicated crazy chaos), and being mom... I was not sure what caused this last bout. I had no other symptoms. I'm sure sister J is investigating the whys of the unknown as we speak (I'm so lucky I have her!!!!)

So back to the title of this post....

One of my favorite times of the year is Girl Scout Cookie Season. I LOVE the cookies and it takes me down memory lane of my years as a girl scout with my BFF, my mom, all the things I learned how to do, all the camp outs and ins, etc... BUT....I have a secret! Now to put that secret out in the open for all to read.... My secret is that I love taking the shortbread Girl Scout cookies and putting them into the freezer. Then having them for breakfast... because I dip them into my coffee for three seconds, in which I gently glide them into my mouth where they melt like chocolate in an oven...Ahhh...so delicious!!!! When I was married, the ex caught me sometimes...and he would make remarks like "if you eat Girl Scout cookies, you'll get fat." So I hid this from him...and only taking no more than 4 cookies at a time and making sure I got up before anyone else so no one would see my secret pleasure....

So this morning, I was so excited when I broke open my first shortbreads of the Girl Scout cookie season...and decided to share my secret with my daughter (no coffee for her...I made her tea...duh...) She looked at me, eyes wide and mouth gaped....then said "Cookies for breakfast....you're crazy mom!" Then she began to giggle... I replied with "yes I am...and proud of it!"

A smile spread across my face as I realize that another part of who I was and who I want to be just snuck back into my life :)

Inside I am laughing....

So we are eating dinner at the Rusty Bucket tonight. I'm playing my role of mom and dad. After arguing with both kids about NO ONE is allowed to have caffine (they are extremely active...enough said)and explaining to Anthony that he really is not 21, both kids settled on rootbeer. I also ordered them waters as well. (points for mom) This is when the comedy act of Anthony and Sylvie begin... Anthony was daring Sylvie to eat the lemon.... Then Anthony poured raw sugar into his rootbeer...and it exploded all over the table. Sylvie decided to make her water Lemonade and spilled sugar all over the table... Anthony then tries to explain to me how a deep fried pickle (which are soooooooo delicious)is a healthy vegetable... Then he has is plate up to his face licking the ranch dressing off... Sylvie then takes her frisbee plate (which is a cool idea) and begins to lick it as well... Then the topic of self pleasuring (of course spoken in code) came up because of Anthony's referral to the ketchup coming out of the bottle....

The WHOLE time I am maitaining a poker face and yelling(a lot).....but inside I am laughing so hard....because I'm still a kid at heart :)

Spoons

I found this when I was first diagnosed with Lupus 7 years ago. After 7 years, I can officially say that it is true...


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 this time, with a 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 choice, 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 a 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".

I don't think I'm that complicated...

I like simple things...

cool fine point pens

random acts of kindness

telling the truth

delicious foods

music

dancing

Why did I choose this topic?
Going through divorce or ending a relationship, you question what you did wrong... So you can improve... It's not like getting an evaluation at work where your boss observes you...then gives you feed back on what you need to work on... Your only role models of a relationship is your own parents or couples on TV and movies (which are fiction)... So who creates the rubric of the relationship? YOU DO :)

What a catch....

So I was laughing with one of my coworkers/friends today. She has an autoimmune disease, 4 kids, and is seperated from her husband. I was telling her that I keep forgetting to make my appointment for the oral surgeon for myself. I bit down on a piece of beef jerky and took out a chunk my tooth...in the front. (classy...I know) So I keep forgetting to make this appointment (which I remembered today), because they will also give me my retainer with a fake tooth... Now back to why we were laughing (I hope you have been able to keep up)....

We were talking about how everyone always says that you'll find love again... or your Prince Charming is out there waiting for you....
But what Prince Charming wants a Cinderella with an autoimmune disease, 2 kids, making a teacher's salary, with missing teeth.... (please laugh...because I still am :) )

So that's why I'm cool being by myself...
But I'm not really by myself...
1. I have AWESOME kids!
2. I have a WONDERFUL family who is always in need...or at least they pretend they are to make me feel better...
3. I have an AMAZING BFF who makes me laugh until my belly hurts and I cry. Plus she keeps me grounded :)
4. I have SUPER friends who live right across the street from me. Neighbors can make super friends!!!
5. I have OUTSTANDING friends who I get to work with every day!!!!
6. I have MARVELOUS sorority sisters who are always there when I need them!!!
7. Then I haveINCREDIBLE friends who don't fall into any of these categories...

Needless to say I have a support system that rocks!!!!

sinus infection...

meds that suppress my immune system + high stress levels = sinus infection = antibiotics



And all of this comes when I have parent-teacher conferences where I have to work 7:25am - 7:30pm two nights... Add on email from teachers about my kid and some issues.... Then a phone call about having a house showing tomorrow (that means I have to clean the house)... Still need to remember to call oral surgeon because my teeth have issues... Did I mention that I have lupus, which means I am totally exhausted.... Throw in normal every day drama... and you have complicated, crazy, chaos!!!



UGH! UGH! UGH! UGH!

As I feel sorry for myself, I remember that there are kids starving in Africa, with AIDS, no meds, and no parents.... That puts my life into perspective... Life is short and things are not that bad :)

Weekends without the kids...

Having the kiddos go the ex's for the weekend is bitter sweet...

Bitter because:

* seeing Sylvie cry and begging to stay with me breaks my heart...

* knowing both kiddos will come back with issues makes my blood pressure go up...

* knowing I can't protect them makes me feel completely helpless...

Sweet because...

* it gives me time to relax and unwind and focus on myself...

* I can go to Victoria Secrets without someone giggling at every thong on a mannequin...

* I can a have a clean, quiet (but lonely) house...

Thank goodness I have:

* wonderful sisters who make sure I'm never too lonely...

* awesome friends who make sure I'm never too lonely...

* precious nephews who make me feel needed when I feel so helpless...