Friday, February 25, 2011

My Furbabies!

My grandpa, who I miss dearly every day, was a great lover of all animals.  I spent every summer growing up with my grandparents, since my mom worked.  And while my grandma wouldn't allow animals in the house, my grandpa always made sure we had cats and dogs outside.  I guess he passed those Irish genes on to me....I've always had at least one pet, and usually more than one!   They bring me great joy, unquestioning love, and constant companionship.   My furbabies are such a huge part of my life....I thought I'd introduce them to you.  It'll take a couple of minutes, as there are five of them!   So, without further ado, here they are....


This is Pixie, one of our dear kitties.  As you can see, she has perfected the art of snoozing.  She is on her most favorite spot, on the back on the love seat.  If she had her way, she would never move from here!!  Pixie was a rescue kitten,  and has been in our family for six years now.

This is my sweet little girl, Bee Gee.  She is also a rescue of sorts....she wandered over to a house we were working on one day.  I called the number on her tag, and in talking with her owner, found he could no longer care for her.  Soooo she came home with me that very day!  She is a Chihuahua/Rat Terrier Mix, and loves to cuddle.  She's been with us about three years now.



This is Macy, one of the sweetest cats I have ever known.  Macy showed up under my porch last winter, a scrawny little kitten starving and meowing like crazy.  I put some food out, and after about three weeks of inching nearer and nearer, she let me pet her.  She never left, and now she's a member of our family!



Meet Sir Winston!  He is my pistol!!  He is a YorkiePoo, and is a hysterically funny little pup.  We got Winston from a friend who saved him from a not-so-nice pet store a couple of years ago.  He has a great sense of humor, and makes us smile every day!



And last but not least is Mr. Bentley, who insisted on hiding behind the bird feeder pole for his picture!  Bentley is a black Pomeranian, very stately, who is usually groomed to look like a lion!  I just LOVE his white face, and the tips of his little white feet!   Bentley is five years old, and he is a dear sweet boy :)

I'm still very much missing my dear sweet Lucky girl....she was nearly 17....she had a good long life!

Someone asked me not long ago if I could remember the names of all the animals I've had over the years....I thought about it, and you know, I CAN!  I can name them all...every one of them.  I guess because they love without any judgment, without any reservation.  Because they cheer me when I'm sad, and make me smile all the time.  And I guess too, when I look at them, I remember my grandpa, who showed me just how special pets could be.  Thanks for passing that on to me, PawPaw :)

See ya soon,
~~~~~Sally~~~~~

Thursday, February 24, 2011

We're Back Home!

We made it back home!  Dijon, my mom, and I traveled last weekend to help my younger daughter and her marvelous hubby move from an apartment into their first house!  It was very exciting, and a lot of work,  and their smiles were priceless.

You know those moments that you want to hold onto forever?  We had lots of those this weekend.  My baby girl's face as she opened the door to her new home with her new keys.  My hubby's and son-in-law's faces as they jumped into a FREEZING cold pool after working in the attic for two hours!  Laughing at the two grandpups as they explored their new yard, full of wonder at all the grass and trees they will have to enjoy.  Working all day until we were exhausted, then looking around at a beautiful new HOME....not just a house, but a home full of love, and memories yet to be made.

Keegan was oh-so-quiet the entire weekend (thanks to my wonderful doctor and the meds she prescribes for my fibro!)  I am always so thankful when he sleeps during family visits.  I treasure my time with my kiddos so much.....they are such a joy.

One thing Keegan demands is that I pace myself....I have to carefully choose what to use my energy on, what to use my spoons on (see previous post).  I will ALWAYS use all the spoons I have to do whatever with my kids....I'll even borrow spoons on the Spoon Credit Account if I have to.  Sometimes the interest payment is high, but its always worth the memories I make.

See ya soon,
~~~~~Sally~~~~~

Thursday, February 17, 2011

Keegan Steals Spoons!!


So, another tidbit about Keegan....He steals spoons!   He's a sneaky little thing!!   In fibro world, spoons equal energy, and our dragons steal our energy.  In fact, my mom now knows exactly what I mean when I say, "I'm all out of spoons today!"  

 To better understand how fibro impacts my weekly daily hour-to-hour planning, give the following a read....its a wonderful essay that I often use.  The author suffers from lupus, but she notes in the final paragraph that this "theory" is great for anyone with a disability or illness.   

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.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
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Dijon, my mom, and I (and Keegan, of course) will be traveling this weekend, so I'll be back early next week....Keegan HATES to travel....I'll fill you in on that, and some other stuff too....Remember, Keegan doesn't run the whole show!
See ya soon,
~~~~~Sally~~~~~

Tuesday, February 15, 2011

Keegan Moves In, and Fibromyalgia Defined....

Keegan moved in with me in 1989.  Specifically, in February of 1989.  At the time, I was a healthy 26 yr old mom of a four yr old and an 11 mo old.  That winter, Dijon and I both came down with a horrible case of the flu....ugh!   But, after a week or so, we both began to improve.   As I was convalescing in the recliner one morning, my left arm and leg suddenly felt numb and tingly....30 minutes later, the right side followed suit. By the afternoon, my muscles felt weak, and it was becoming difficult to write.  Hmmm, this wasn't normal!!  A trip to the primary doctor, and a phone consultation to an internist, had me on my way to the hospital.  Keegan had arrived....I just didn't know it yet.

The doctors first suspected Guillane-Barre Syndrome, which leads to temporary paralysis....But my symptoms did not progress to the point where that diagnosis fit.  I was sent home, and the trips to the specialists' offices began. Bloodwork of every sort was done, as were x-rays, MRIs, and even a spinal tap. All tests were normal, and doctors were left scratching their heads. The numbness, tingling, and weakness continued.....the fatigue became unbearable.  Keegan was grinning, and hiding :)



Keegan has been with me ever since.  He and I lived together for 18 years before I learned exactly what he was....fibromyalgia.  It took doctors that long to diagnose me.  That made him a bit tough to deal with, since I had no clue how to manage his shenanigans!  


What is fibromyalgia, exactly?  Well, it is a syndrome where sufferers experience long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues.  The pain can be deep and aching, radiating, or shooting and burning.  It often feels like we have the flu!   


People with fibromyalgia also experience problems with insomnia, fatigue, headaches, depression,  anxiety, and other issues.  We often wake up with stiffness and body aches, and pain can increase with activity, stress, and cold and damp weather.   Numbness and tingling in hands and feet are also common. 


There's also the strange condition called "Fibro Fog"....people with FMS have memory and concentration problems.  For instance, Keegan takes great pleasure in preventing me from following a simple set of directions....Really, just try to list six easy steps for me to follow....not gonna happen.  I just can't remember it at all.  We often have trouble thinking of easy words, like "truck"....So I'll say, "You know, the long thing with lots of wheels that runs on the highway and hauls stuff."   And Keegan grins.


The onset of fibromyalgia symptoms often occurs after a stressful event of some sort, either emotional or phsyical.  (Researchers aren't sure yet exactly what happens.)  For me, it was the flu.  Somehow, a switch was flipped, and the fibro began.  


Keegan moved in.  He made himself at home, and he grinned.  And my life changed.  


But here's the thing....it's OKAY!!  My life did change, and I can't do everything I'd like to, and sometimes I don't feel well.....BUT I have a Wonderfully, Amazingly, Full and Happy Life, in spite of the Fibro!  


...........And you can too....If you have fibromyalgia, you can too.........


You see, Keegan causes chaos and he grins, but he doesn't run the whole show....I refuse to let him.  Don't let your dragon run the show either.


See ya soon,
~~~~~Sally~~~~~ 








   





Monday, February 14, 2011

Why a Dragon???

So I have fibromyalgia....OK, but why do I refer to it as a dragon?  Well, lots of us with fibromyalgia (or fibro or FMS) call it the dragon.  The term comes from this essay by Mr. Ray White, written many years ago....It explains well how the syndrome can affect us.


The Dragon Grins...
The doctor explains to me that I have a Dragon that has come to possess me.  This Dragon is mean.  This Dragon is deceiving and destructive.  "But," the doctor says, "We can work at keeping this Dragon down."

"What is this Dragon's name?" I ask.  The doctor in his professional calmness says, "The Dragon is FMS...Fibromyalgia Syndrome."  The doctor explains to me ways we are going to keep him down.  "Feed the Dragon some meds like Trazadone or Elavil.  Do some light exercise, maybe the Dragon will get tired and leave you alone for a while."

I turn to leave and for the first time I see the Dragon.  He looks at me with those evil yellow eyes, and the Dragon grins.  I say to myself that Dragons can be slain.  I read that in stories in School.  The armor-clad knight slaying the Dragon and triumphantly returning to his town.  As I am in this daydream the Dragon jumps on me.  I wrestle with him.  His hot breath sears my head.  His roar makes my ears ring.  He leaves me in a pile of flesh on the ground.  I ache all over.  Some parts of my body are painful to touch.  I am exhausted as I pick myself back up again.  The Dragon looks back to me-and the Dragon grins.

"I hate you, Dragon."  I scream as he walks away.  I feed the Dragon the medication prescribed.  Slowly at first, the increasing a little as time goes by.  I do begin a little exercise.  I change some of my diet and increase the carbohydrates.  I move about relatively pain free.  And I say to myself "Maybe I have beaten the Dragon.  Maybe the Dragon was only my imagination.  I was just a little depressed and down, but now life is great."

I look to the sky and see dark clouds looming.  A cold north wind begins to blow.  I hear a thunderous pounding of foot steps.  I have heard that sound while watching Jurassic Park, but now I'm not watching that movie.  BOOM...BOOM...I don't see anything.  BOOM...BOOM...I panic and start to run.  I dare not turn around as I try to run faster...faster. A claw grabs my shoulder.  Searing hot pain rips down my back....staring upwards, terror runs through my body.  And the Dragon grins.

The Dragon has returned!  "You can't escape" the Dragon yells.  "You are mine!!"  I try to get up as the Dragon slams my body back to the ground.  I can hardly stand the pain as he tortures me by stomping my hands.  With his teeth he pulls at muscles in my back and legs.  He burns my head with his intense fiery breath.  The battle is finally over.  He stares at my crumpled body as I try to get focused on this beast.  My eyes finally clear enough to see, and the Dragon grins.

Days pass.  My fingers no longer work like they used to.  My muscles feel like the second day  of Olympic training, but the sensation does not leave.  My head is not clear.  I do not see well at night.  Parts of me are cold and clammy.  I am stiff.  Why did the Dragon beat me so hard?  When I try to sleep, the Dragon slaps me awake several times at night.  Sometimes I am freezing.  In bed I awaken drenched in sweat.  It hurts to stand.  It hurts to sit.  My mind says one thing and my mouth says another.  And the Dragon grins.

Sometimes I think I am in a nightmare and will someday wake up, the real me.  I don't look sick, so why do I feel so bad?  Friends and family laugh when I mess up on my words talking to them.  I feel so stupid looking in the refrigerator and not knowing why, or walking around in circles either not finding what I was after or forgetting what I was looking for.  If I am driving at night and it starts to rain, the road disappears.  And it is not uncommon to go somewhere and then make wrong turns coming back.  My mind says right, my body turns left.  I can go somewhere and not remember how I got there.  I am not dumb, just not "connected" anymore.

Outwardly, I laugh and play, but inside I have to cry sometimes.
And the Dragon grins.

By Ray White
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So there you have it....I look at my FMS as my Dragon, and I call him Keegan....He like to breathe fire and create chaos, and grin at me.  I like to make him drowsy so he naps alot :)   Tomorrow, I'll tell you how we met......

Thanks for stopping in,
~~~~~Sally~~~~~

Saturday, February 12, 2011

A New Blog....So who are Sally and Keegan?

Hi, and welcome to my new blog!  I'm Sally (actually, that's my wonderful nickname, given to me by a dear family friend....long story, that I'll share with you one day)  I'm nearly 50 (yikes!), a stay-at-home wife to a wonderful man I call Dijon.  Our kids are grown and gone, so it's just the two of us, our dogs, our cats.....and Keegan.

So who is Keegan?  This may seem a bit strange, but Keegan is my name for a dragon I live with....Keegan is the dragon that is fibromyalgia.  Why the name Keegan?  Because it means "Fire" and at times, he breathes fire, and he can disrupt my activities, my schedule, my day.   And Keegan is an Irish name....I'm Irish, so I'm guessing my dragon would be Irish too, doncha think?   So it's a good fit!

Keegan and I have been together for over 20 years now, so we know each other well.  I'll share more of our story in the days ahead....it has been an interesting one!

This blog won't be ALL about Keegan...He doesn't run the whole show, after all...LOL   There'll be lots about me, Dijon, our love of antiquing, crafts, furniture making, and whatever else comes along....but I also hope to inspire others who have been told that they will be living with their own fibromyalgia dragon, one they may just name as well.  (After all, we have to smile a bit, right?)  Inspire them to know just how full life can be, in spite of fibromyalgia.

Sooooo, I hope you'll join me....I'm looking forward to sharing, and I hope it blesses someone.

(This post is dedicated to my dear 16 yr old pup, Lucky, who passed away this morning...May you frolic happily in the green meadows of Heaven tonight...)


                                                     ~~~~~SALLY~~~~~