Another Saturday

you have heard the song - Just Another Manic Monday. Today is Just Another Simple Saturday.

Drew was up at the crack of dawn. His new medicine is helping him sleep better. Since he is getting more rest while he sleeps he is getting up much earlier and in a better mood. Today it was 6:30. Of course he didn't bother Scott. He came to see me. I convinced him to climb up in my bed for a while. finally after an hour of him asking every 10 minutes if it was morning I gave in and got up. At that point it was a MUST HAVE COFFEE moment. Gotta love my Keurig. 45 seconds later a nice big cup of java. Not as good as J& S but the best I could do. (Sarah if you are ever giving away coffee let me know.) AT 830 Scott joined us and at 9 I started breakfast. It was nice to make a family breakfast. Eggs, turkey bacon, potatoes and toast. I miss times like that. All four of us around the table. They are certainly few and far between.

There has been some Saturday morning house cleaning. I have had a couple hours of work for the Yarn Shoppe, mainly computer stuff.

Now to enjoy the day with my family.

C

Fiber

With the fun I have been having at the yarn shop lately, I have become more and more interested in Hand dyed and spun fibers. I have told Scott I want to look into taking a spinning class.

I have found the most incredible site to get hand dyed fibers. Actually PhatFiber supports many artists who spin and dye wool. She has a monthly box that can be bought. I haven't been lucky enough to purchase one They sell out so fast. They are offered one day a a month and when the are gone they are gone.

This week she is having some awesome give aways. Check out Phatfiber.blogspot.com and enter some of her fantastic drawings. I have been able to find yarn at each giveaway site that I am simpling drooling over. Mabe if my ship comes in - or California gives me my tax refund I can grab some before it is gone.

Awesome stuff Phat Fiber.

feeling good

For the first time in a long time I feel good. Not just physically but mentally. It actually worries me because I don't remember feeling like this for a long long time. I am enjoying my work at the Yarn Shoppe. Frank is up and running. I am doing some teaching of classes.

Drew is on a medicine that is making the differnece between night and day. His teacher says the change is remarkable. He is able to do his work, the outside noise doesn't seem to bother him as much. He made it into BEAM Club - Be Excited About Math. He had a series of tasks he had to accomplish over the year - count orally to 75, write his numbers to 30 - with NO reversals, use flash cards to put the numbers 1-30 in order, identify all his coins, and know his shapes - including his 3D shapes - He got it done this week!!!! He gets a special T-shirt and recognition from the Principal. It is a big deal. Once he does his site words for his teacher he will also be in BEAR club - can you guess what it stands for?

Phil is still trying to figure out life. It is Ok at 20 who knew what they wanted to do. Heck I thought I had it figured otu at 25, then again at 34 and now at 41 I am reinventing myself once again. It is a growing process and no one expects him to figure it out all at once. I think what he doesn't realize is that many kids his age don't have it figured out but htey are not smart enough to admit it.

Scott is so ready for his surgery. I worry so much about him. He has good days and bad days. This can't get hear fast enough for all of us.

I am trying not to wait for the other shoe to drop but in the back of my mind I keep expecting it. Guess I just need more
Faith, trust and pixie dust
C

missing teeth

Yesterday was exciting. Drew has had 2 loose teeth. One of them had the other tooth almost all the way in but because of his sensory issues he would not wiggle the baby tooth to get it to fall out. He had an appt for this upcoming Thursday to have it pulled if it hadn't fallen out on its own.

Some how, Drew managed to get the most wiggly tooth lodged behind this other front bottom tooth. It couldn't be moved back. So I had to call the dentist. They managed to get him.

Now the dentist Drew goes to is for kids only. I have tried to talk them in to taking adults - or at least adults who have fears of the adult dentist. Talk about a racket. They have a waiting room filled with games, toys, movies and video games. They also have a patio with a rock climbing wall and bikes and trikes to ride while kids wait. I noticed they even have magazines such as AMerican Cheerleader. Above every station there is a TV secured in the ceiling for the kids to watch while they are getting their teeth cleaned or worked on. They give them headphones to listen to the movies thru. The kids even get sunglasses to wear because of how bright the dentist lights can be. It is quite a production. After the appt if they have no cavities they are issued a certificate of achievement for being in the no cavity club. They get a grab bag of toys, balloons, toothbrush, toothpaste, floss. Plus they get their picture taken and it is put on a magnetic card to take home for the fridge. All I got was a toothbrush and Colgate toothpaste.

So we had this emergency appt. They gave Drew nitrous oxcide before they administed the novicane. The nitrous was "flavored" with bubble gum. He was a riot. He kept saying 3, 2, 1, blastoff and would shove his legs up in teh air. The nurse and I couldn't stop laughing. He was a trooper. They had to pull the front 2 bottom teeth. He walked out of there with 2 balloons, a new airplane and 2 stickers.

It only looks like one tooth is missing because the adult toot on the right was so far in behind the baby tooth.

Then the toothfairy brought him 3 dollars. It cost me 94.00 in copay. Some how I think he got the better end of the deal.

OK I get it. I am not in control

I have always had control issues. I have to be in control. If I can't control it I feel helpless. So in the past week here is a short list of what is not in my control. Phil joining the Navy, Drew finally getting a DX of PDD-NOS and Fetal Alcohol Effect, and the news from Scott's upcoming surgery. They missed some diverticuli and have to remove 4-6 more inches of his colon. so they have to open him up from his sternum to his the bottom edge of his stomach. Recvoery - instead of being 2 weeks- will now be up to 6.

I know I am not in control. I get it God. Now help me get control of my issues of helplessness.

unexpected visit

Phil and one of his frat brothers decided to come out for spring break. I had forgotten about spring break. Drew's spring break isn't until the beginning of April. Funny how priorities change as kids grow. I was so focused on Drew and his spring break I forgot about phil having one.

Anyway the boys decided they needed to go somewhere so here they come. I think this house is just a repository for clothes and to sleep. I know they are headed to San Fran for a day. We are talking about a day at Six flags on Saturday. Phil wants to take Mccomas to In n out burger - west coast must do.

Other than that I am hoping for a quiet few days with phil and getting to know Mccomas.

Edited to add - Phil arrives March 12.

Pixie dust to all
C

Wish I had the guts

I have commented about Phil joining the Navy. The more I read the prouder I become. I tell him that everytime I talk to him.

I have found 2 wonderful support groups who have answered my questions, put me in touch with their sons to answer Phil's questions, give support when I feel overwhelmed. These groups are amazing. They never feel any question is to silly or emotion too ridiculous.

I had someone (non Navy)tell me not to cry in front of Phil. Navy mom's will tell you it is OK 1) because you are proud, scared, terrified, happy, sad. and 2) if you don't let them see the emotion they may feel you are hiding something and then they worry about you when they need to be concentrating on what is really important.

I wish I had the guts to tell all the well meaning people who say - it is just like going away to college, or they have no clue what he is in for or it will be good for him to be taken down a notch to just SHUT UP!!!!!!!!!! We need your support right now. We need you to tell Phil you are proud of him and that no matter what happens you will be there. Don't tell him the horror stories of what someone may tell you. Don't tell me I have my head buried in the sand. I don't. This is my child we are talking about. My first born. I have spent hours on the internet researching, asking questions, taking notes, understanding this new way of life. I have much more to learn but I will learn it for Phil's sake and for my sake.

You may know some one in the army, marines or who was in the NAvy in the past but this is the Navy NOW!!!!! I am in daily contact with women who are living it, Who have kids doing what Phil wants to do, who have washed out of what Phil wants to do, who tell me what to expect every step of the way. these women have given me and my immediate family more support in the past week than you would believe. I have heard from Nuke School mom's, Mom's of DEP's, Mom's of BC, those who just got out of PIR and are headed for Class A, B, or C school. I know the difference between grad and go and a weekend of liberty when he goes thru PIR. I now know the difference between a frigget and an aircraft carrier. I know what to expect when the form letter comes from basic, and that "kid in a box" is not death but all of their belongings they reliquish at boot camp. My cell phone will be come my appendage and the postman will think I am a stalker. I have been told the STar Bangle Banner takes on new meaning. I know to have Phil get a package A for his photos, and that a good graduation gift is in addition to something nice several packages of Hanes extra soft undershirts. The Navy issue ones are very scratchy.

If you know what any of the things above mean then you are a NAvy mom and know how important it is to get and recieve support. If you don't then please don't give even well meaning advice, just tell Phil he can do anything he sets his mind to, that you are proud of him, and Thank You for what he is doing. And for me, just be there when I am missing my kid and need a friend to talk to.

Awesome new product

I have to tell you my friend - All Thumbs aka Lori has an awesome new product review on her website. You have to check it out. it is an earbud detangler.

You have got to check it out. http://allthumbsreviews.blogspot.com/2009/02/tangled-earphone-cords-product-review.html

I look at some of her reviews and think - why didn't I think of that? My earbud for my phone gets tangled as does my Ipod ear bud. These will make it super easy to keep them wound and easy to manage. Make sure you get there to check it out.

And make sure you tell her Cathy Sent ya.

Proud Mom

It has been a roller coaster week. But I have to say I am proud of Phil. My son will soon be a member of the US NAVY. It has taken some getting used to but once I got past the sinking feeling that my son was over his head and didn't know what he was thinking, I realized this was something he needed to do for whatever reason. He has told me for years he wanted to make a difference. I think he found a way to do it.

I have cried tears of fear, tears of joy, tears of being a proud mom.

Now I am sure there will be rants on here about missing him and wondering what he was thinking. I have been reading Navy Mom forums and blogs and have gotten a better idea of what to expect and that has helped so much. I think a lot of my apprehension was fear of the unknown.

Now I know when he goes to basic I will get 3 phone calls if I am lucky. He will only be able to write letters on Sundays. But he will live for mail from all of us. He goes to MEP next week - Military Enlisted Processing. He will take his placement test and that will determine when he will go to basic. Then if he gets his first choice after basic he will head to Goose Creek SC for 18 months of training. At that point he will be assigned a ship(not a boat as I have been corrected way to many times - if it floats it is a boat in my opnion.) He plans on requesting a Pacific home port. He will then spend 6 months at sea and 6 months in his home port for 4 years.

So that is the latest. I will post about our trip to reno tomorrow.

Frank

Let me introduce you to Frank. Frank is my friend. He is a sheep that lives at my favorite yarn shop in Elk Grove. Frank likes to travel. Frank has a big family. Frank will travel and blog about his trip. While he is gone on his excursions his family will fill in. His family is quite unique. There is Percy the Pink Llama, best friends Ebony and Ivory, Frankie the little sister, Teresa (Teri) and her son Rodney, Violet the baby of the family. There are others who will check in from time to time as well.

www.frankthemascot.blogspot.com

Frank already has plans to go to Reno next week, Disney in March, 2 cruises in April, Kansas - we hope in June.

Please follow Frank on his escapades and meet his family. If you ever find yourself in Elk Grove California - stop by the Yarn Shoppe, knit a spell, and meet Frank, his family and friends.

C

Hate being responsible

I HATE being a responsible adult. I hate doing the right thing. But being a responsible adult and trying to set a good example for my kids.

I just canceled both of our trips to Disney. It wasn't that we couldn't afford them I just didn't want to given the current state of the economy.

I found a wonderful deal in Reno for Feb 19-22. total room cost for 3 nights 130.00 Then for Drew to take a ski lesson or two will be about 100.00. The hotel is offering credits for the casino as well as the midway and dining credits. So we will do that and it will be cheaper. Disney for 3 days ticets alone were going to be 450.00. Drew had no idea so we don't have to worry about him being disappointed.

We also decided that instead of flying to Florida for Christmas it would be fiscally more responsible to go to Anaheim. We can do LegoLand, Universal, etc and it will still be cheaper that Disney. And we don't have to pay airfare.

I just have to take my pixie dust in different ways given the economic climate.

Always remember there is pixie dust you just may have to look a little harder sometimes for it.

Cathy

update on the teenager

Well, he made it thru surgery just fine. His jaw is wired shut for the next 4 weeks or so. May be up to 6. Just depends on how well it heals.

The problem is - as with all teenagers - he thinks he knows that is best. The doc said he must be under ADULT supervision until Sunday. So he is at his grandparents house. He is not to go to school until Monday so I emailed his teachers telling them what was going on. He is bound and determined to try and go to school tomorrow afternoon. His bio teacher agrees he has no business at school. I am waiting to hear from the rest. I told him he was at his grandparents house with out wheels for a reason. He tried to tell me he would have one of the guys at the frat come get him. Mike was not impressed with that news and finally set Phil strait as to how it was going to be. Period.

He is lucky so many people care about him and are willing to drop everything to help him and take care of him. When I talked to Peg she said he was sleeping and seem resigned to his fate - at least for now. She figures if he starts to feel better he may try to negotiate a few hours of parole.

I guess that will depend on the warden on call.

Thanks for the prayers and emails.

C

Update

I am exhausted so this will be short. I am going to bed. We are looking at worse case here. He will have surgery tomorrow morning. they will realign his jaw and then wire it shut for 2-4 weeks. He may have to go back in braces to finish correcting the cross bite that has occurred.

I thank my lucky stars for the people in Topeka. From Dr. Kevin Cassidy, my old friend, who got the ball rolling on getting him to the correct doctors to Dr. Baker who will performing the surgery tomorrow to Mike, Brooke, Peg, and Carol who have all stepped up to take care of him since I can't. Phil wont' fuss with Brooke and so I know I will have my way and that she will look out for him.

Right now I am hitting a brick wall and am totally exhausted. So I will update tomorrow after surgery.

damaged jaws and good friends

I am sitting here waiting to hear from Phil. It the fraternity annual "funk bowl" a fraternity brother took Phil out.

Now the funk bowl is a all out contact tackle football game that is held every year on Superbowl Sunday. There are no helmets or pads for this game. Just "brotherly love" fight to the death leave 'em bleeding football.

Phil called and said Mike was taking him to the minor med because he might have a broken jaw. The docs at minor med did an xray but couldn't see anything. Sent him home with pain pills and orders to call in the morning if not better. Said htey would get him into an ENT?!?!?!

Fast forward to this morning...

He calls and says that he is going for a panoramic xray. They still see nothing but Phil tells me that his bite is off by about 1/4".

I do the only thing I can think of. I call my old friend and Phil's orthodontist from many moons ago. I tell the receptionist my problem. They get Phil in within the hour.

From what I was able to tell from Phil's gritted teeth talk, Kevin took one look, had Phil attempt to bite down and said you need an oral surgeon.

He tried to call the ones where Phil was seen yesterday, but they were all at lunch. So KEvin sent Phil to a new guy in town. HE took one look at phil and got on the phone with Tallgrass and started yelling about how poor their treatment was and why the HE@@ were they trying to get him to an ENT when his nose wasn't broken and his throat wasn't collapsed. This doc tells Tall Grass that they need to have their oral surgeon look at him PDQ. He sends phil to the fraternaity to wait for a call. The oral surgeon from Tall Grass then passes him off to a Dr. Zeller who Phil is currently waiting to see.

Best possible scenario - reset jaw and wire shut for a few days
Worst case scenario - surgery and wire shut for a few weeks????
Either way he is going to drop the weight he wants.

I will update as situation warrents.

Pixie dust comes alive

I looked at Scott yesterday and said we need to escape. It has been a long few months. With my gall bladder surgery and then everything that happened with Scott. I need to re energize.

So off to the phone I go. I manage to get a room on points at the sheraton across from Disney. I got reservatins for valentine's night at Goofy's kitchen. All set to go.

WRONG!!!!

Freinds at the yarn shop told me that we were going President's weekend and that is the absolutely worst weekend to go. Every kid in SoCal will be there as well hs half the kids from NoCal. It is a 3 day weekend so lots of parents head there for the long weekend - rookie resident mistake.

Then

We look at the calendar and realize that Saturday Feb 14 is the start of the of the Tour of California. We have both been looking forward to it. Scott used to race against some of the competitors when he was a kid. Plus a chance to see Lance Armstrong race is a huge pull.

Since he agreed to go to Disney for a weekend the least I can do is move our weekend. So I have changed out dates we not go Feb 19-22. I have to make reservations for goofys kitchen again.

So the plan is that while Drew is at school I will pack overnight bags and leave them in the garage. Scott is leaving work early and when he gets home he will put the bags in the trunk. This way Drew won't know. Then we will load up and head out. I have had many people tell me times to get to anaheim range from 5 hours to 7 hours. Who knows.

I am really looking forward to getting away for a few days.

Here's to a magical weekend with a very generous helping of Pixie dust.

C

Maybe Mom does know something.

I have mentioned is several posts about a girl Phil likes. He has wanted to date her but he was following the advice of the guys in the frat. Big mistake. DO you know what happens when 30+ 20 something guys live together. There is a fear of showing their caring side. Even to the opposite sex.

All Thru Christmas I kept hearing about this young lady. Phil had it bad. He would text her on a continual basis - thang goodness for unlimited texting plans. She would drive him crazy. Anyway, Phil had been following the advice of his frat brothers. They were telling him to be standoffish -and to "just make your move already" He was getting nowhere with her.

The other day he was in a really bad mood. He even took it out me which Scott agreed was unusual. I texted him and told him it was time for tough love. I asked why he was letting everyone else dictate how he persued this girl. Obviously what the guys in the house were telling him weren't getting him anywhere.

He called last night. I get "thanks mom" I am perplexed.

He said " I decided to be myself and do what I knew was right" I am more perplexed.

HE said "you raised me right" OK chalk one up for mom but what the heck are you talking about?

He said " I am not macho and uncaring." OK I agree

He said "I went to the florist and sent XXXX 2 yellow roses yesterday"

HE HAD BEEN LISTENING after all. Years of drilling into him how to treat a girl had paid off.

He is the talk of the young lady's sorority house.

Mom 1 frat brothers 0 (at least in how to treat a lady.)

Christmas with Louise

Every year this goes around and it seemed appropriate to share~ I hope no one is offended, as it is meant only in fun. It was submitted to a 1999 Louisville Sentinel contest to find out who had the wildest Christmas dinner, and won first prize.

I spewed coffee everywhere when I read this. I hope you get a chuckle out of it .


As a joke, my brother used to hang a pair of panty hose over his fireplace before Christmas. He said all he wanted was for Santa to fill them. What they say about Santa checking the list twice must be true because every Christmas morning, although Jay's kids' stockings were overflowed, his poor pantyhose hung sadly empty.

One year I decided to make his dream come true. I put on sunglasses and went in search of an inflatable love doll. They don't sell those things at Wal-Mart.

I had to go to an adult bookstore downtown. If you've never been in an X-rated store, don't go. You'll only confuse yourself. I was there an hour saying things like, "What does this do?" "You're kidding me!" "Who would buy that?" Finally, I made it to the inflatable doll section. I wanted to buy a standard, uncomplicated doll that could also substitute as a passenger in my truck so I could use the carpool lane during rush hour.

Finding what I wanted was difficult. Love dolls come in many different models. The top of the line, according to the side of the box, could do things I'd only seen in a book on animal husbandry. I settled on 'Lovable Louise." She was at the bottom of the price scale. To call Louise a "doll" took a huge leap of imagination.

On Christmas Eve, with the help of an old bicycle pump, Louise came to life. My sister-in-law was in on the plan and let me in during the wee morning hours, long after Santa had come and gone, I filled the dangling pantyhose with Louis's pliant legs and bottom. I also ate some cookies and drank what remained of a glass of milk on a nearby tray. I went home, and giggled for a couple of hours. The next morning my brother called to say that Santa had been to his house and left a present that had made him VERY happy but had left the dog confused. She would bark, start to walk away, then come back and bark some more. We all agreed that Louise should remain in her panty hose so the rest of the family could admire her when they came over for the traditional Christmas dinner.

My grandmother noticed Louise the moment she walked in the door. "What the hell is that?" she asked. My brother quickly explained, "It's a doll." "Who would play with something like that?" Granny snapped. I had several candidates in mind, but kept my mouth shut. "Where are her clothes?" Granny continued.

"Boy, that turkey sure smells nice, Gran," Jay, my brother said, trying to steer her into the dining room. But Granny was relentless. "Why doesn't she have any teeth?" Again, I could have answered, but why would I? It was Christmas and no one wanted to ride in the back of the ambulance saying, "Hang on Granny! Hang on!"

My grandfather, a delightful old man with poor eyesight, sidled up to me and said, "Hey, who's the naked gal by the fireplace?" I told him she was Jay's friend. A few minutes later, I noticed Grandpa by the mantel, talking to Louise. Not just talking, but actually flirting. It was then that we realized this might be Grandpa's last Christmas at home. The dinner went well. We made the usual small talk about who had died, who was dying, and who should be killed, when suddenly Louise made a noise that sounded a lot like my father in the bathroom in the morning. Then she lurched from the panty hose, flew around the room twice, and fell in a heap in front of the sofa.

The cat screamed. I passed cranberry sauce through my nose, and Grandpa ran across the room, fell to his knees, and began administering mouth-to-mouth resuscitation. My brother fell back over his chair and wet his pants and Granny threw down her napkin, stomped out of the room, and sat in the car.

It was indeed a Christmas to treasure and remember. Later in my mother's garage, we conducted a thorough examination to decide the cause of Louis's collapse. We discovered that Louise had suffered from a hot ember to the back of her right thigh. Fortunately, thanks to a wonder drug called duct tape, we restored her to perfect health.

Louise went on to star in several bachelor party movies. I think Grandpa still calls her whenever he can get out of the house.

Why there is no Fibromyalgia day

I promise this my last fibro post for a while.

Nobody could remember when it was.

Nobody could remember the color of the ribbons.

We couldn't find a color ribbon that wasn't used that coordinated with the colors of all the sweats.

The ribbon's pin pushed on a trigger point.

How could there be a day for something that doesn't exist?

Patients with fibromyalgia couldn't fold the ribbon into the proper shape.

Patients with fibromyalgia are too depressed to get out of bed to attend a rally.

Social Security would use our ability to rally as proof of our ability to work.

Everybody kept getting paper-cuts from trying to fold the flyers.

The bags carrying our medications were too heavy to carry.

No one wanted to leave home overnight because they couldn't pack their beds.

Somebody had to hold the planning meeting, and nobody's house was clean enough.

Someone set up a massage booth, and it got so crowded it collapsed. Since everyone was in the booth at the time, nobody was left to rally.

Everyone wanted the bumper sticker, "See, I told you I was sick," but the printer ran out.

There weren't enough Porta-Potties in the state for the folks with Irritable Bowel Syndrome.

The politicians realized the size of the voting block, and the media trucks filled all the parking spots.

Some doctor said, "It's all in your head," but they never found the body.

The booth offering 'Chocolate Diet Pills' ran out in 10 minutes.

The people using TENS units shorted out the Pacific power grid.10 percent of the crowd went into a flare at the same time, and the resulting glow melted the ice caps at both poles.


author unknown

SPOONS

I have an invisible chronic syndrome. Most people don't realize I am sick because I don't look like it. A woman with Lupus, Christine Miserandino, came up with the Spoon Theory to explain to her friend what it was like to live with a chronic condition day in and day out. I had heard of the Spoon theory before but never really got it until I reread it a few weeks ago.I have been struggling with symptoms for several year but only got a REAL diagnosis a year ago. I am just beginning to accept my limitations. Some days I have lots of spoons when I get up. Others I only have 4 or five.

Christine 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."

I am copying the spoon theory from the website butyoudon'tlooksick.com I know it is long but please read it.

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

When I first read this I thought only of my mom and what she went thru. I wish I had this story when she was sick. While I don't suffer from Lupus I still must make choices each day as to what I can/will/want to.

count your spoons before you go to bed and Thank God for each spoon you can use and always have one in reserve so you can spend that spoon on a friend.

A little cheese with my WHINE

I started this post as a whine about what is wrong with me but as I wrote it I realzied it was more of an information piece about Fibromyalgia Syndrome and me.

I have been diagnosed fibromyalgia This is not something made up that is just in my mind. This is an honest to god syndrome with real symptoms. I try hard not to complain because I know so many people have worse problems than I do. But it gets really frustrating when I try to vent and hear things like - your mom never complained about her illness, see a shrink it is just depression, the pain can't BE that BAD, lose weight that will solve ALL your problems, why are you always tired, why can't you remember anything, the list goes on.

Fibro is not a well understood problem. It is very difficult to diagnose as there are other diseases out there who mimic Fibro. I have recently had ruled out Chrons, Hep A-C, Celiac, thyroid, and ruematoid arthritis. The main diagnosis for Fibro is something called pain points. There are 18 points where pain typical is in a person with Fibro - if you have at least 11 and everything else has been ruled out then they will agree you have Fibro. Yea for a diagnosis but now how to treat it. It is not a well understood problem so it isn't easy to treat. (there isn't even a correct spelling for Fibro in spell check so how can it be treated if it can't even be spelled?)

I recently went on Lyrica - it works OK but I am on a low dose. Unfortunately I have gained 10 pounds on it. People on it tend to gain up to 10% of their current body weight. I am asking to go off of it Friday. I have learned from reading that pain management is one of the main components. Problem is most regular docs don't understand the amount of pain a Fibro patient suffers. On a good day my pain is a 4 out of 10. Those days I can function pretty well. I try to manage to be a normal housewife and mom on those days. But right now because my former doctor doesn't understand fibro or the management of it I am changing docs, I sit most days at least an 8 out of 10. Yes I know I have given birth and labor was painful. BUT this is different pain. It is hard to describe. Ever have the flu? Of course you have. you know that achy feeling you get when you are on day 2 or so? It is like that but only worse. Some days I feel like someone has poured cement in to my body and I have to stop and think about how to walk.

A second problem is fatigue and insomnia. I get very tired. Look for an artitcle tomorrow about the spoons. It explains the fatigue very well. I have taken to telling Scott I have about used all my spoons for the day. It is a signal to me that I am listening to my body and to Scott that I need some relief from mom/wife duties for the rest of the evening. Some days it happens at 2 or 3 and others it happens at 7. Even then, I try very hard not to miss my bedtime routine with Drew. It isn't is fault that I have this crap. Insomnia is a nightmare - no pun intended. I do try to be a regular mom and not have this impact him too much. I volunteer in his class for 3 hours one day a week. I use all my spoons by then. He has playdates etc. I just have to manage what I do on those days so I am able be alert and able to deal with things.

Another major problem I suffer from is memory loss - some call it Fibro Fog. It is not dementia. I know who people are and what my car keys are for. My problem is I can't remember names of people and things. I never know when it will strike. The other day I couldn't remember what a magnet was called. I knew exactly where it was on the fridge, I knew the color and what I needed off of magnet but DAMN if I could remember what to call it. A week ago I couldn't remember my phone #. I was talking to an insurance company and she rattled off a phone #. I had no clue if it was mine. I had to stop and look for my # to make sure it was correct. It can be embarassing and frustrating. Be patient with me. I don't like not remembering things. It has always been something I was very good at. Scott has taken to having me describe what I am trying to say then he fills in teh blank. I used to get mad when he would guess before i could describe. So we have found a way to communicate. Phil gets pretty frustrated with me but I think he is doing better.

I try to make a joke out of most of this - what else can I do? Wallow in self pity? Nah my mom wouldn't have done that. She was strong. And I try to be like my mom - to a point. She was dealt a very crappy hand. My hand is better but don't blow me off when I try to talk about it. I am not asking for sympathy I am asking for understanding. I don't need advice, I need a cyberhug - softly because hugs can hurt some days. Ask me how I am truly doing if you don't want to know. My typical answer is I am fine. don't press for more information just to be polite. IF you want to know I can answer your questions. I am reading lots on how to work with this.

soft hug to everyone. Look for spoons tomorrow.

FTPD
C