Thursday, December 30, 2010

Wii Yoga Time


I have been trying to keep up with a half an hour of Wii Fit time every day.  L has decided that it's so much fun to do the Wii games beside me. So fun! Can you hear my sarcasm? While I usually am stumbling over her while doing the step dance with my little platform... Today it actually gave me a laugh. 

I was standing on the platform attempting to do some Wii yoga for the first time.  I thought I should start out slow.  I didn't want to end up in a sweaty pretzel position on the living room floor waiting for my husband to get home to help me up. So a breathing exercise was what I started with. The game had just told me to stand on the platform with my legs spread as far apart as my shoulders. Something moved out of the corner of my eye and I looked down to see what L was doing.  She was standing with her hip cocked out to the right.  Her head was tilted to the side and her arms were thrown out with her fingers spread wide. And as if creating this new pose wasn't enough... She was doing this all.....in her underware!!! In her Dora underware!!! Way to kick it up a notch there L Girl!

I would love to share with you the picture I got of her doing this pose, but I'll spare you.  Priceless! 

Image found here.

Oooooo slippers...


Allow me to introduce you to the comfiest, coziest, most wonderful-est pair of slippers I have ever ever EVER owned.

*sigh*

I do love them so! They wrap my feet and calves in fur and make me feel as if I am walking on air. These are my new bestest friends. (Here's hoping my actual best friends don't read this. Ha!)

Tuesday, December 28, 2010

Wii Fit


I just got the Wii Fit for Christmas.  I set it up tonight for the first time.  I knew there would be trouble when I swear I heard the game say "Ouch" when I got on the platform! Ooo boy. T says I was just hearing things, but I don't know. So I clearly need to loose some weight.  And if what the game said wasn't bad enough after figuring out my bmi the computer added weight, around my waist, to my avatar! Now my avatar has a little intertube-looking roll at my hips.  As if looking bad in person isn't enough.  They have to make my avatar look bad too? Does the game think that that will make me want to work harder to get the weight off?!?! I admit to being a little embarrassed and slightly offended as well.  What are they going to add to the game next.  A heckling man calling me, "Fatty!"? Or a drill sargent screaming at me?

Anyway, I added my goal to the game, chose my first training exercise, and went for it. I decided to try a step trainer first. I will be the first to admit that I am not coordinated at all.  At........all! My first attempt had me tripping over my foot, chasing away one of the dogs, making the other sit up with her head tilted to the side, and requiring the game to pause to allow me to get back in step with the other avatars. I can say, however, that I had more fun with it then I thought I would.  And I was actually mildly disappointed that I had to stop when my husband told me that his Eagles were on and he NEEDED to watch them.

Here's hoping that it stays fun for me and it helps me loose some weight.  I'll be back at the game tomorrow!

Friday, December 24, 2010

I know that the last few of my posts have been a little down.  So I wanted to share a brief part of our night last night with you. (Please forgive the crude drawings, they are meant to be silly.)

Our daughter had been talking non-stop since we had gotten home. She began following us around the house with "presents" half wrapped in drawing paper. I went upstairs... she went upstairs.  I ran downstairs and hid in the downstairs bathroom... she found me. T had finally had enough and told her to give Mommy some time to herself and go draw. L happily agreed with the thought in her mind that she would show us her pictures...



She slowly comes around the corner into the living room.Yes, her bangs are in her eyes. She was refusing to let me pull them out of her eyes.


 

She starts excitedly running across the room!






And shoves the drawing right into T's face. "See Daddy, what I drew?!?"






What we've come to expect from L's drawing is something similar to this.






What she hands T is this. T blinks at the picture and says, "What is this? More!".  He's frantically trying to buy us more time. There's still a half hour before bedtime.






A few minutes later L comes excitedly running across the room...again.





 And shoves the drawing right into T's face. "See Daddy, what I drew?!?"





She's added a yellow scribble. T blinks again and says, "More coloring!".





A few minutes later L comes excitedly running across the room...again.




 And shoves the drawing right into T's face. "See Daddy, what I drew?!?"






This time she had added a pink triangle. T blinks and says, "More coloring! More coloring! More coloring!!!".




A few minutes later L comes excitedly running across the room...again.




 And shoves the drawing right into T's face. "See Daddy, what I drew?!?"






This time she has added one teeny tiny purple dot.




Tim blinks...again...and says, "Bed...NOW!"






Bedtime can be so sweet sometimes!

Thursday, December 23, 2010

Kicked Puppy

I'm feeling a little like a kicked puppy right now.  I had my Rheumatologist appointment yesterday which ended in her telling me that I needed to go on "the scary medicine". While she was at it she asked if I was planning on having another child.  Well isn't that the six million dollar question!?! Ha! After we spoke about how I was feeling at the moment and listening to me hem and haul about our choices... She finally spoke up and mentioned that she thought I would be better off if I didn't have another child.

Now today, I had another doctors appointment with my Gynocologist.  I won't go into that appointment much. (I am hearing all the men reading this sigh in relief!) Suffice it to say that I will be having surgery in late February for some problems I've been having.  At the end of the appointment my doctor asked "the question" again."More kids in your future?" Ah!!! He and I went into my horrible first pregnancy, my health, etc. Then he recommended that I get a tubal ligation .

What are the odds that I would have two doctors in two days recommend that I NOT have another child??? If it was just a doctor that I do not respect or didn't feel "got" me, then I would have just blown them off.  But these were both very respected doctors, whom I love, and I know truly care about my health and quality of life.

I do have to admit that I have secretly known for awhile that I shouldn't have another child.  With how I have been feeling lately wrapped up with all the energy I try to expend with my daughter, I really don't know how I could have done all those late night feedings! Especially since I will be the first to admit that I am a terrible bear when it comes to missing sleep.  But just because I've been thinking it doesn't mean I was truly ready to face the prospect of never having another child.

I am trying to keep in mind that I have a fantastically, beautiful, wonderfully quirky daughter.  She is my husband's and my world. I could not imagine life with out her.  God has truly blessed us with her. Every day she brings something new to our lives.  Her smile shines brighter then the sun and her eyes twinkle more then the stars when she laughs. She is so special and I couldn't have asked for a more perfect daughter for us.

But I still have to admit that my heart hurts a little tonight...

Katy Perry - Firework



Sorry it's so grainy! I am really loving the lyrics to this song at the moment....

Do you ever feel like a plastic bag
Drifting throught the wind
Wanting to start again

Do you ever feel, feel so paper thin
Like a house of cards
One blow from caving in

Do you ever feel already buried deep
Six feet under scream
But no one seems to hear a thing

Do you know that tehre's still a chance for you
Cause there's a spark in you

You just gotta ignite the light
And let it shine
Just own the night
Like the Fourth of July

Cause baby you're a firework
Come on show 'em what your worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on let your colors burst
Make 'em go "Oh, oh, oh!"
You're gunna leave 'em fallin' down-own-own

You don't have to feel like a waste of space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe you're reason why all the doors are closed
So you can open one that leads you to the perfect road

Like a lightning bolt, your heart will blow
And when it's time, you'll know

You just gotta ignite the light
And let it shine
Just own the night
Like the Fourth of July

Cause baby you're a firework
Come on show 'em what your worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on slet your colors burst
Make 'em go "Oh, oh, oh!"
You're gunna leave 'em fallin' down-own-own

Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through

Cause baby you're a firework
Come on show 'em what your worth
Make 'em go "Oh, oh, oh!"
As you shoot across the sky-y-y

Baby you're a firework
Come on slet your colors burst
Make 'em go "Oh, oh, oh!"
You're gunna leave 'em goin "Oh, oh, oh!"

Boom, boom, boom
Even brighter than the moon, moon, moon
Boom, boom, boom
Even brighter than the moon, moon, moon

Wednesday, December 22, 2010

A Game of Clue


Have you ever felt like you were just stuck in the middle of a big game of Clue?  Who went where with the what now??? Miss Scarlett... In the kitchen... with the pipe wrench...right? Right?!

That's how I feel my Sjogren's Syndrome has been lately.  I never know what's going to pop up, happen, or keep me from doing something, however you want to say it. I have been having a bad time lately.  I've been feeling arthritic, as my past posts have said. Luckily enough I had one of my followup appointments with my Rheumy, Dr. A, today.

She's decided to try out a new-to-me drug. Methotrexate. This drug is most commonly given to people with cancer as a chemotherapy drug. Methotrexate is given to patients with severe joint pain and inflammation. If it works it is suppose to be effective in relieving joint inflammation and pain, slowing disease progression, and preventing disability by delaying joint destruction.  It works by slowly down one's immune system. Another words, it prevents my body from attacking itself.  So that would be a serious plus!!!!

On the down side are all the possible moderate side effects I could have to deal with... Acne; chills and fever; dizziness; flushing; general body discomfort; hair loss; headache; infertility; irregular periods; itching; loss of appetite; lowered resistance to infection; miscarriage; nausea; sensitivity to sunlight; sore throat; speech impairment; stomach pain; unusual tiredness; vomiting.

And the severe reactions include  (rash; hives; itching; tightness in the chest; swelling of the mouth, face, lips, or tongue); calf or leg pain or swelling; change in the amount of urine; chest pain; coma; confusion; coughing up blood;diarrhea; difficult or painful urination; dry cough; fever, chills, or sore throat; mental or mood changes; mouth sores; one-sided weakness; red, swollen, peeling, or blistered skin; seizures; severe or persistent nausea or vomiting; shortness of breath; speech changes; unusual bleeding or bruising; unusual pain and discoloration of the skin; unusual tiredness or weakness; vision changes or vision loss; yellowing of skin or eyes.

I have to say that I am scared of this drug.  My mother (who has some of the same problems as I) recently tried this drug with VERY bad results. She was beyond exhausted, lost hair, and had many other extremely nasty side effects.  I really really don't want those side effects!!  On the other hand I know of someone else who has taken this and been fine with it.  As well as my Rheumy stating that she has people much much older then I, who she treats, that can handle this drug.

I guess only time (and God) can tell what this drug will bring. But for now, I do know....

It was Dr. A... in the office... with Methotrexate!


Image found here.

Tuesday, December 21, 2010

Cookies


This morning I woke up feeling like a sore arthritic eighty year old.  My fingers were stiff and swollen. And my knees just did not want to do what my brain was asking of them. To top it off L woke me up early yelling about something completely silly.  Those two things combined to make me one grumpy Mama!

So when life hands you lemons........

..........save the lemons for later and make some Christmas cookies!

With the Christmas music playing, L and I made and decorated ten pans of cookies this morning.  I took plenty of pictures.  To which L said, "Stop the picture taking and help me decorate Mommy!".  And I did! We shook those sprinkle containers to "Frosty the Snowman" and wiggled our hineys to "A Holly Jolly Christmas".  All while our faithful "foodie" dog kept watch over the floor.... right under L's chair. And if that isn't enough to make a person smile, we also sampled quite a few of those cookies! Mmmmm....Delicious.

Enjoy the pictures!






Monday, December 20, 2010

The One About My NYC Trip!



I am SOOOO excited! A friend of mine has a birthday coming up next month. We plan to celebrate it up!

She's lived in New York and can't wait to show myself and some friends around.  I am going to finally get to see a show on Broadway.  I have wanted to do that forever! Her husband has managed to get us "producers seats" to an 8 o'clock Wicked.  Which pretty much means fantastic! 

To make the trip even better we're staying over night.  To make that even better another friend's husband got us amazing rooms.  Where? ....... Times Square! And if it was even possible to make it even more fabulous, one of the rooms has a view of the famous square!!

We also plan on doing some sight seeing while in the Big Apple.  Maybe the upper floors of The Rockefeller? I am sure it will be fabulous. And I can't wait to eat all the yummy NYC food!!

I am also sure that we will end up doing a lot, a lot, A LOT of walking.  I am uber nervous about my energy level. I am hoping I can keep up with the girls while we are there.  I will deliriously happy to be having the experience. As I will get to cross off #32 on my 40 before 40 list! But, seriously, I am majorly concerned with how my body is going to handle this trip.  I know what happens when I push myself too far.  It's not pretty.  I end up laying on bathroom floors, because I sit down in exhaustion, and then can't get the energy to get back up.  I really REALLY don't want that to happen while on this trip!!

The positive is that this is all being done in a 48 hour time period. Going up Saturday morning and returning Sunday sometime. So it's a relatively small amount of time to be a tourist in the Big City. The negative is that the small amount of time will trick me into "powering through" til I get home. Which will leave me weak and exhausted for the next few days.  And completely useless to everyone around me.  I am crossing my fingers and praying that doesn't happen.

So I am so so so so enthusiastically excited about this trip with friends. And I have to admit to a moderate amount of anxiety as well.  But I am guessing I will have so much fun while I am in NYC that I will totally forget to be worried about my health!

Tuesday, December 14, 2010

Christmas Fun



My garland

L and I decided to have a fun festive Christmas afternoon.  We turned on a Christmas movie and made popcorn and cranberry garlands.  It was so fun!

I popped a whole bag of popcorn, got everything ready, and showed my daughter what to do. Slowly I began to realize that L was eating WAY more then she was actually putting on her garland.  Eventually she just decided to admit that she was done and was just interested in eating the popcorn.  Towards the end of my garland it had become a race to see how much popcorn she could eat before I got mine finished. Looking at the picture of her garland, I am sure you can see why she didn't need dinner!

A picture of L's entire garland.



Ooo and then my honey was fabulous enough to watch White Christmas with me tonight.  Nothings better then putting my girlie to sleep, turning on the tree lights, turning off the lamps, sipping hot chocolate, and snuggling while watching that!!!

Sunday, December 12, 2010

Don't Judge a Book...


Lately, things have been happening to make me think hard. It was a perfectly healthy looking woman walking from a car that was parked in a handy cap parking spot.  A man using the elevator when he could have used the stairs. There was another woman who only walked the grocery cart half way back to the store rather then returning it to the cart corral where it belonged.

All of those people could easily have made someone judge them by their behavior.  But I looked closer.  I saw the first woman limp slightly when she thought no one was looking. The man leaned against the railing for aid as I watched him from across the elevator.  And the second woman had lines of fatigue and pain on her face.  Not something easily recognizable for a person who doesn't encounter those things on a daily basis.  But it's very simply identified by someone who sees the same when they look in the mirror every day. They say a picture can say a thousand words, but they may also being saying it all wrong. How often do we see things and end up not really seeing them?

It has begun to make me wonder if people, unknowingly, do this to me.  I received a glimmer of an answer the other night with friends. We all took turns writing what we loved about each other in books.  For a moment it made us feel like we were back in high school again. There were plenty of giggles and snorts and side comments made while we did this. I got my book back and read it immediately.  I had to know what they thought!! Quite a few of my friends said they liked that I was so strong. Well.  I've been thinking about this. The phrase, "Don't judge a book by it's cover" comes to mind. I don't mean to come across as thinking it was a silly of them to say this because I love that they think that of me. But I am starting to wonder if I've unknowingly pulled a bait-and-switch on my friends. At some point, while the lights were out, I switched the cover of my book.  The title might say "Strong".  But I feel that the inside might just read more like....

 She is a sometimes semi-strong mom who occasionally stumbles through her days....
She mostly feels weak.... She secretly wishes she were stronger and she often breaks down in
tears while talking with her husband about her day to day symptoms.... So she sometimes
indulges in partial pity parties, small sulks, and mini mental rages about life.... 

I almost feel that I am a fraud. Am I fraud because my friends see me as strong?  I guess not all of them see my usual daily "issues" that I have. How broken down I can feel at times. That is partially why I write this blog. I can get these things out in the open and share.  I am exposing my insecurities in my desire for others to know what people with invisible illnesses feel at times.  Also, in the expectation that some will recognize the same feelings and know that they are not alone.

I am hoping that maybe I am stronger than I realize and I am just not giving myself enough credit. That thought and the fact that I come across as strong, even when I have my moments of weakness are what I will focus on.  And just now...not to sound cheesy but... I remember my faith and realize that I am strong, even with my faults, because of my relationship with God.  Maybe that's the strength that is seen in me?


Image found here.

Saturday, December 11, 2010

Yesterday

Yesterday was so filled that I wasn't even able to write about it until today.

Our morning started off normal enough until it was time for preschool. Our neighbor has decided to let his 150 pound pit bull (who has previously bitten someone unprovoked) have the run of the neighborhood.  L and I were out front preparing to get in our car and the dog charged us while growling. We were both rather scared.  We ended up screaming for the neighbor and he never even heard our cries for help!  Fortunately, I was holding my daughter.  So I yelled at the dog to "stay!" in my meanest loudest Mom voice.  Surprisingly he listened. I slowly backed up to the car, threw L in her car seat, and scrambled in after her. So, needless to say I had to have a visit with the local police. (We were told we needed to call every time we saw the dog out after he bit someone.) It was not the most pleasant start to the afternoon!

Later in the afternoon I was allowed to go into L's preschool for a cookie and carol singing time. I walked into the room and found sixteen reindeer looking at me... I kept looking at L's class and couldn't figure out what was "wrong".  Until I realized that every child in the class had a red nose.  Except for my girl!  When I asked why she had a black nose she replied... "Everyone else wanted to have a red nose and be Rudolf.  I just wanted to be different from all of them.".  Well OK then! I always knew my daughter was an original.  So we all sang Christmas songs and munched on cookies. It was a fantastic time that I won't forget anytime soon.

Later L got to go out to dinner with T and my parents.  While I was lucky enough to get a Mommy night out with all my fellow Mommy friends.  One of our friends was nice enough to open her home to us.  So we all ate super yummy finger foods and mouth watering desserts. Some of us drank and others were happy with soda. We spent the evening talking, laughing, and crying because we had laughed so hard.  It was a fantastic end to the day.  It was SO needed after the crazy busy week that I had just finished!

Thursday, December 9, 2010

Change


Change. I hate it! When I know change is coming, I am not one of those gracious women who takes it in stride and does it all smoothly and beautifully.  No.  I go into the change kicking, fighting, and crying my woes about why it couldn't just stay the same. And I'm not at all a pretty crier. Generally this is just with the big changes. But lately I am finding myself getting more anxious about all the little changes as well. OK, doctors appointment was Thursday at 12. Now it's Thursday at 2. I feel as if I belong in my own "Kathy" cartoon! "ACK!"

As I posted last night, I was in pain. It seemed like my nerves were going crazy.  I was throbbing with pain. By the end of the night if my husband even lightly touched my hand it hurt. So I took some meds to help with my pain.  It takes the edge off so I can get to sleep and it just plain knocks me out. This morning my pain is somewhat lessened. The bad thing is that now I somehow find myself dealing with dizziness. Fortunately for me it's not too bad. If I move v...e...r...y... s...l...o...w...l...y... then I am fairly OK. The moving fast or at a normal pace is for the birds today, it would seem.  So I am moving about the house as if I am in a constant Tia Chi form. I feel as if I should be saying, "Breathe in...breathe out" while Mr. Miyagi follows behind me.

Which brings us back to change. Once again I am changing the plans that I had for today. The cookies we had planned, will not get baked much to my daughter's dismay.  It breaks my heart a little to tell her that I can't bake with her. I feel as if my plans are always being changed right now due to my health. I wonder if this is God's way of telling me to "Lighten up!"? I'm trying to find a positive in this at the moment.  Maybe after awhile of always changing plans I will be a more versatile person?

As I sit here writing this, in my semi-grumpy mood, L has just reminded me to "Lighten up!" in her own way.  She is bouncing across the couch cushions energetically chanting..."Hey boys everywhere...there's a chicken in my under ware!" Her footy pj's make just the perfect accessory to this little act of hers. She's having so much fun that it seems contagious. I think I may have to try this...........after my world stops spinning!

Wednesday, December 8, 2010

Shots



I got my allergy shots this afternoon.  And I am in some serious pain!  My arms and hands are not feeling good at all.  So T banned me from doing any photo editing, took L to bible club for the evening, and is now doing some Christmas shopping.  What a guy!

Here's hoping that I'll be feeling a little better in the morning. L and I have a date to make Christmas cookies for her preschool sing-a-long on Friday.

Image found here.

Tuesday, December 7, 2010

Sjogren's Smells



After all the great feedback I received from my earlier attempts at Sjogren's humor, while borrowing the tune "The Twelve Days of Christmas", I decided to give it another try.

This one is to the tune Jingle Bells. With a little "hat tip" to the childhood spoof of "Batman Smells".... Enjoy!

Sjogren's Smells

Have a four year old on my heels,
dashing through my day.
Wondering when I'll crash,
with exhaustion on the way.
So busy this holiday season,
And Sjogren's is no fun.
But it seems so much worse,
when I'm always on the run.

Oh...Sjogren's smells... Sjogren's smells
Why are you even here?
Nobody seems to like you!
Your nature's too severe.
Oh...Sjogren's smells...Sjogren's smells
You really think your dear?
I'd rather see my gyno,
and have a pap smear!

I've presents to buy,
and Christmas cards to write.
Somewhere along the way,
I need to eat a bite.
Then Sjogren's comes along,
attempting to start trouble.
I know right then and there,
I have to relax on the double.

Oh...Sjogren's smells... Sjogren's smells
Why are you even here?
Nobody seems to like you!
Your nature's too severe.
Oh...Sjogren's smells...Sjogren's smells
You really think your dear?
I'd rather see my gyno,
and have a pap smear!

Image found here.

Saturday, December 4, 2010

Decorated Again

This time I changed the look of my blog.  I got tired of the old style.  I like the new one a lot better.  What do you think?

Sunday, November 28, 2010

Officially Decorated


We spent the afternoon and evening decorating for Christmas.  I enjoyed myself.  L had even more fun.  I  put decorations and then she would go behind me and move it somewhere else.  I remember doing this to my Mom as a little girl.  It drove her nuts.  I completely understand why now!  Finally when it came to decorating the tree I just gave her ornaments that she was in charge of hanging.  That kept her busy while I put all the fragile ornaments higher up on the tree.

Afterwards we pulled up You tube and watched some Christmas specials until L's bedtime.  Thanks to Miss Julia over at " Reasonably Well " we watched a super cute Muppets special that my daughter loved.  A perfect ending to a great night!

Saturday, November 27, 2010

Yay!

We had a crazy night last night!  I couldn't sleep. Insomnia!  So I started checking out extras that I could download for my photo editing program that I use.  I downloaded quite a few extra brush types that I cannot wait to use in my editing!! Here are some pictures that I did in Photoshop just fooling around with my new "toys".  I feel like a kid on Christmas!






Some clouds and a little "fairy dust".



Grass, dandie
lion tufts, and some random swirly designs.



Starry starry night.






Foot prints and a little grunge look.

Friday, November 26, 2010

12 Days of Sjogren's



I have been SO excited for Thanksgiving this year!!!  Not for the turkey, pies, or family time.  Though they were all fabulous!! I have been excited because I knew that as soon as Thanksgiving was over that I could reasonably start celebrating Christmas without seeming like a certifiable quack!

Guess what.....  I had a fantastic day with family and friends yesterday but Thanksgiving is OVER!

*Maniacal laughter ensues*

So in honor of my first day of celebrating Christmas I have written a song.  Most will be familiar with the tune of The 12 Days of Christmas.  Enjoy!


On the first day of Christmas my Sjogren's gave to me....
A stiff and arthritic knee.


On the second day of Christmas my Sjogren's gave to me....
Two cracking ankles
And a stiff and arthritic knee.


On the third day of Christmas m Sjogren's gave to me....
A visit to my doctor's
Two cracking ankles
And a stiff and arthritic knee.


On the fourth day of Christmas my Sjogren's gave to me....
Itchy dry eyes.
A visit to my doctor's
Two cracking ankles
And a stiff and arthritic knee.


On the fifth day of Christmas my Sjogren's gave to me...
 Insomnia!
Itchy dry eyes.
A visit to my doctor's
Two cracking ankles
And a stiff and arthritic knee.


On the sixth day of Christmas my Sjogren's gave to me....
Painful achy joints
 Insomnia!
Itchy dry eyes.
A visit to my doctor's
Two cracking ankles
And a stiff and arthritic knee.


On the seventh day of Christmas my Sjogren's gave to me....
A desert like mouth
Painful achy joints
 Insomnia!
Itchy dry eyes.
A visit to my doctor's
Two cracking ankles
And a stiff and arthritic knee.


On the eighth day of Christmas my Sjogren's gave to me....
Eight pills to pop.
A desert like mouth.
Painful achy joints.
 Insomnia!
Itchy dry eyes.
A visit to my doctor's.
Two cracking ankles.
And a stiff and arthritic knee.


On the ninth day of Christmas my Sjogren's gave to me....
A mystery diagnosis.
Eight pills to pop.
A desert like mouth.
Painful achy joints.
 Insomnia!
Itchy dry eyes.
A visit to my doctor's.
Two cracking ankles.
And a stiff and arthritic knee.


On the tenth day of Christmas my Sjogren's gave to me....
Ten swelling fingers.
A mystery diagnosis.
Eight pills to pop.
A desert like mouth.
Painful achy joints.
 Insomnia!
Itchy dry eyes.
A visit to my doctor's.
Two cracking ankles.
And a stiff and arthritic knee.


On the eleventh day of Christmas my Sjogren's gave to me....
Blankets for my chills.
Ten swelling fingers.
A mystery diagnosis.
Eight pills to pop.
A desert like mouth.
Painful achy joints.
 Insomnia!
Itchy dry eyes.
A visit to my doctor's.
Two cracking ankles.
And a stiff and arthritic knee.


On the twelfth day of Christmas my Sjogren's gave to me....
Fellow Sjogren's Bloggers.
Blankets for my chills.
Ten swelling fingers.
A mystery diagnosis.
Eight pills to pop.
A desert like mouth.
Painful achy joints.
 Insomnia!
Itchy dry eyes.
A visit to my doctor's.
Two cracking ankles.
And a stiff and arthritic knee.


Image found here.

Thursday, November 18, 2010

"Hello!"


So it seems as if the doctor I saw this morning is speaking my language.  He was v-e-r-y nice.  He listened to AND heard everything I had to say.

Fortunately or unfortunately, depending on if you are a glass half full or half empty kind of person, the doctor said we need to take a "wait and see" approach. I have a two week waiting period to see if my problem resolves on it's own. However, the doctor did promise to call me next week at the half way mark to touch base and see how things were progressing. I don't hear that very often from a doctor!

Did I mention how great he really was?!?  So nice!!!


Image found here.

Wednesday, November 17, 2010

In Which I Feel Like Charlie Brown's Teacher...



Do you ever feel like your Doctor is really only hearing you as if you were speaking like Charlie Brown's teacher??? I have a feeling many people feel like this on a normal basis with one doctor or another.  As far as doctors go I have two doctors that are so amazingly in tune with what I need that I have stuck with them.  My allergist and rheumatologists are fantastic.  Other then that I more or less float around and use what ever family doctor is available in the practice I use.  That goes for any other doctor's practices I use, Eyes, Gyno, ENT docs, etc.

For a normal person this would usually work well.  I am finding out that this is not a good practice for me anymore.  I have now run into too many doctors that try to fit me into their cookie cutter mold and turn out feeling bent out of shape and disgruntled. I seem to be one of those people who have that percentage happen to them.  The one who has a doctor say, "So, with this drug there is a .5% chance of this..... happening." and then end up being that .5%!! The random doctors I end up with never seem to understand this about me.

I have a doctors appointment tomorrow morning. The original doctor, I saw, was acting like Charlie Brown. This will be round two. So hopefully the next will actually listen to what I am saying this time. 

Here's crossing my fingers....and toes...and any other appendages that will cross!

Saturday, November 13, 2010

Memories

 
I have had the fortune of spending two amazing Saturday evenings, with my daughter, doing things we have never done together before. I feel so lucky at the moment!

Last Saturday we went to Bass Pro, an outdoor sporting goods store in our area.  We heard Santa was coming to two and L just HAD to go see. We arrived to find a crowd of people singing carols.  Jolly people wearing bouncy Santa hats were passing out aromatic cups or hot chocolate and yummy sprinkled sugar cookies. There was, of course, one of our local new anchor "celebrities" leading the singing while we all waited.  We made a merry group singing our songs. There were more people anxiously waiting the arrival of Santa than we thought.  L had difficulty seeing so T plopped her on top of his shoulders.  She had the best seat in the house.  Though, T could have done with out the cookie crumbs sprinkled down the back of his shirt. We began singing "Santa Clause is Coming to Town" and around the corner came Santa.  He was very happy to be arriving at the store, on a boat pulled by a truck. Because what else would Santa arrive in to a sporting goods store? Ha! L was beyond excited.  She was so thrilled that she stopped singing to stare at Santa.  Her eyes twinkled and her mouth fell open in her excitement. I managed to capture the look, above, with my camera phone. I was so moved by the moment, that I teared up.  I was sure at that very moment, that we had just made a memory that would last a lifetime.

Once Santa got our group whipped into a frenzy of Christmas spirit we all walked him into the store.  He walked right past L on his way in and made sure to wave a special "hello" at her. We helped Santa count down to turn on the lights in the Christmas village they set up for his arrival.  Eventually we got in line to talk with Santa and get a picture of him with L. We won some gift cards while waiting and  L was allowed to pick out something in the store to spend them on.  She picked out a build-a-bear reindeer she named Rose. The whole evening was so magical!

Tonight was almost as good!  We went out to celebrate my husband's birthday a week early.  We decided to go to a hibachi restaurant.  L had never been to a hibachi place before.  She felt like a big girl to be allowed to go to a "fancy" place to eat with us, she said.  She was so excited to see the show that she wriggled in her seat like a puppy. The man, who was to be our chef, was fantastic.  He played it up for L, as if she was the only one watching him perform. She sat in awe while she watched him cook our dinner. I almost had more fun watching her reactions than I did watching our chef. She was constantly asking questions and the man very patiently answered every one of them for her. He even managed to get her to eat peas and broccoli by telling her that they were special Japanese ones and so they must taste better.  Boy, did she ever buy it! They were all but gone by the end of the meal. L was such a good girl tonight and she had such a great time. Her smiles were contagious!

It's so wondrous to just forget about everything for awhile and immerse yourself in a little kid's first experiences!

Tuesday, November 9, 2010

Time Change









This is my face normally...








This is my face with not nearly enough sleep! It looks like someone punched me in the one eye.  And this picture doesn't do the coloring around my eyes any justice.  They looked severely bruised.




 Of course this is how I feel I look!








I have to say this time change thing has been a killer for us this year.  Last year it didn't really effect L, which lured me into a false sense of security.  This year she has been getting up way too early and screaming for us to say it's time for her to get up.  Yesterday she was up at 6:20 yelling, "I don't like this time change thing!".  And to top it all off she is refusing to take naps as well.  So not only have I not been getting enough sleep, she has been absolutely miserable and whiny throughout the day as well.  I have to say I am not liking it either. Come to think of it I am messed up with the time change as well this year.  I am tired an hour too early and then waking up when she gets up.  I hadn't realized that L's sleeping habit had trained mine!

Have I mentioned that I love my in-laws???  I know that was a completely random statement to make. They decided to take L so she could sleep over last night, since they hadn't done so in awhile.  So I managed to get a full night's sleep and sleep in to my heart's content.  I woke feeling fantastic.

Hopefully I won't look like I am turning into the Incredible Hulk's girlfriend now!!!

Saturday, November 6, 2010

Competitive


I am not a competitive person but apparently my daughter is going to be for sure! She comes by it honestly, however.

I find myself rarely feeling competitive.  My streak comes out when  play Spoons, as I wrote about in my last post.  My family plays a mean game!   They is competitive by nature, so naturally, I feel the need to be when I play the game with them. My Aunt is classic for standing up to play Spoons with us.  She watches everyone out of the corner of her eye.  The look on her face says that she is determined to get one of those spoons if it's the last thing she does!!! My cousin is the squawker in the family! A squawk can be heard coming from her position at the table for many different reasons during a game.  The cards are being passed too fast, she lost a card, she thinks someone else is diving for a spoon, or she's missed out on a spoon all together, could be some of the causes.  My Mom tends to be the family member who plays dirty.  Oh, she follows the rules.  But once it's time to grab for a spoon, watch out, all bets are off! She has, literally, wrestled my Aunt to the floor over a spoon before! There have been spoons bent over this game, gouges in skin, and brush burn as someone has fallen or been knocked to the floor. 

Another game, that I have learned not to play with my family, is musical chairs.  It sounds like a fairly tame game to play with family members.  This is simply not the case with my family.  The music starts and a manic look suddenly creeps across my uncle's faces and it's game on!  It turns into contact musical chairs the second my Grandma turned on the music.  I think after awhile she kept the music going longer and longer because she was afraid of what would happen when she would turn it off.  Out of the twelve chairs used, at least five of them had some kind of damage inflicted upon them. Broken chairs littered the basement floor. My last play of the game, and biggest folly, was diving for a chair that my Uncle (a forty year old I might add) was going for as well. I dove for the chair and somehow found myself crashing into a coffee table a foot away! Needless to say the table went flying out from under me and broke another chair. Once I was over the shock of being thrown into a table, I sat up with my ears ringing and realized that if it wasn't already then my body was very shortly going to be covered in bruises! It turned out that I was covered in a nasty mottled bruise from my knee all the way up to my hip. I learned my lesson there!

And if all that isn't enough I have also learned to be very wary of my competitive uncles and cousins when my Grandma comes up with new and "interesting" games for us to play! In case you were wondering, never.... EVER.... play an egg game with your family if your Grandma cannot boil eggs properly enough to make then hard boiled! It turns ugly very quickly! Putting a bunch of competitive grown men, and their crowd of children, in a room with slightly under cooked hard boiled eggs and tell them to be the last one standing with an un-cracked egg is never a good idea! We all ended up with partially cooked egg all over us that day. 

Then we have my husband's side of the family. He has been in four square games with his cousins that have ended in blood being spilled and little kids running away sobbing in tears. The first time I ever met his family I was forced into playing a game of volleyball with them.  To say that I am uncoordinated would be a seriously gross understatement!  I am sooo not good at volleyball (sports).  I tried to warn them all! By the time was done I had had an elbow to the face, been ridiculed, and made fun of because I am such a lousy player!

Knowing all this is it any wonder that our daughter has ended up with a competitive streak a mile wide? The other night she convinced Opa (my dad) to play golf with her on our Wii system. Opa was game but apparently hadn't read the "Grandparent's Guidelines to Playing Games with Their Grandchildren" book.  Rule number one clearly states that he was supposed to loose the game.  It didn't turn out that way.  L lost by one point.  She dumped the controller on the ground, and proceeded to jump up and down while having a major fit.  She was SO mad that she did not win!  Apparently everything revolves around her winning right now.

Needless to say, we need to work on her good sportsmanship skills before it gets really bad!

Friday, October 29, 2010

Spoons


This week I have been playing a serious game of Spoons! If you aren't familiar with this fantastically fun game let me enlighten you.  You basically sit in a circle with spoons in the middle of all of the players.  There is always one less spoon then players. Everyone passes cards until they collect four of the same card. The first one to collect four of the same card grabs a spoon.  All the other players subsequently grabs for the remaining spoons. This usually results in mayhem and hilarity for all playing or watching. In my family this can be a physically dangerous game to play.  But that's a blog for another day! Ultimately, the person left without a spoon is the looser of that round.

I know by this point some of you are left wondering why I am babbling on about the game Spoons. Be patient, I'll get there... I have also mentioned The Spoon Theory on my blog before.  If you have not read it or don't remember you can check it out here on Butyoudontlooksick.com/. The short version of this theory is to imagine that you need to have a spoonful of energy for everything that you do during your day. People who have auto immune diseases need to count every spoon they have for their day. Or they just may run out of spoons (energy) before they've even begun.

This theory and the game Spoons has really come into play this past week with me. I was sitting at the table feeling as if I am the looser at the game. I was watching everyone else around me holding their spoons and smiling! I have had a zillion and one things to do this past week.  Most of them revolved around something that I felt I needed to do for my daughter.  Jumping in leaves, making party treats, volunteering at L's preschool party, hayrides, walking in a Halloween parade with L's float, along with photo editing (for family and "business") were just some of the things I ended up doing. It was all supposed to be fun and I was going to have fun doing it, darnet! Crazy busy! And, yes, I was told by quite a few that I was crazy and pushing myself waaay too far! I was too busy trading in spoons and borrowing from future stores of energy to stop and think about it.

Few things bring out my competitive streak. The game of Spoons just happens to be one of those things. Ordinarily, when I am left sitting without a spoon, I glare furiously at everyone who has one in their hands. I want to stomp my feet and wonder why I couldn't have ended up with one of the spoons.  It leaves me ready for another round sure that I'll gain a spoon the very next time. At times in real life when I end up with out any spoons I feel like sitting and sulking.  I sometimes get down about it and think of myself as a horrible Mommy. But this week I had my competitive Spoons pants on.  I lost quite a few rounds of Spoons. I was sitting with out a spoon.  But, man did I ever rally! I waited for the next round and went back in playing to win!! I feel like a champion Spoons player. If I can survive a week like I've had and rally so many times there's no reason that I should ever let myself be convinced that I will be "down for the count"!

It's funny how such a positive thought can come out of such chaos. Even if it was fun chaos!

Thursday, October 28, 2010

Halloween Treats

I finished L's treats for her Halloween party at preschool yesterday.  I was waaaay tired after standing for the time it took to make them all.  Unfortuantely, I was too tired to go to bible club with L last night.  Then I had a horrible bout of brain fog which ended in me finally remembering my daughter's birth date about five minutes into my conversation with her doctor's office. So, my exhaustion combined with the fact that I could not go to bible club with L, combined with my brain fog incident ended with me sitting in a blubbering mess of tears at dinner time.  L looked on in confusion then came over to hug me.  She said, "It's ok Mommy, I know you've had a long day!".  She made it better, yet again.

Here are two pictures that I took of the treats I made!