Sunday, December 29, 2013

From the Window

Before Christmas we had a pretty good amount of snow fall. It wasn't the eight inches or over they were calling for originally. We did get about five or six inches though. There was enough snow to need shoveled and more than enough for L to play in as well. I bundled her up and sent her out with her Daddy. She wanted me to come out too. And I wanted to go out and play. It just wasn't possible for me to do it that day. It was waaay too cold for my body and I was in too much pain to do anything more than stand there.

So instead of sit around sulking because I couldn't do what I wanted (which was be outside interacting with everyone) I found a way to do what I wanted and still stay inside comfortably sitting on the couch so I didn't spend the little bit if energy I had left.

And that right there more or less sums up a lot of parenting with Sjogren's Syndrome.

A.) Stating what I want to do with my girly.

B.) Evaluating what I feel like that day, or sometimes that hour, since my body can be so fickle with Sjogren's.

C.) Thinking about what I can do depending on how I am feeling.

D.) Figuring out a way for me to do what I want with what I can do and working with it.

In my case this day, I knew that going outside wasn't an option. So I sat inside the house, on my couch, with the window open. Yes, I know crazy! And I probably looked like a crazy person too!
But it worked out perfectly for us all. I got to interact with my girly and take pictures of her playing in the snow while I stayed warm and used almost no energy. Even the L's dolls got in on the act!

All in all I say that was a "win" for everybody.



Friday, December 27, 2013

Book Review


I have finally finished Tales From the Dry Side! I feel as if it took me forever to get through. Not because I wasn't enjoying it, BEACAUSE I WAS, but because I have been sooooo tired by bedtime when I do my reading. So my husband kept taking the book and telling me to go to sleep. Which is all very counter-productive. Oy!

I've been reading Tales From the Dry Side by Christine Molloy. Tales From the Dry Side is a compilation of  thirteen different "Sjogren's stories" about how the patient's discovered they had Sjogren's Syndrome and their subsequent journey's to the present day.

I found each essay to be interesting in different ways. I was taken by the fact that each story had a different  overall feeling behind each one. It was like peaking into a window of the person's soul in a way. I was particularly touched by the stories of the younger patient's as I was, and am still though not according to my daughter, young when I was first diagnosed myself.

I finished this book and let out a woosh of air. I felt "heard". Which is silly, I know, since I had absolutely nothing to do with the stories in this book or the process of putting it together. But I felt "heard" anyway.

I started writing my blog because I wanted to put my story out there for the world to take in. In the hopes that I could bring more recognition to Sjogren's, even if it was in a very simple and humble way. I wanted to expel the the stigmas that follows autoimmune diseases while sharing how much damage something can do to a life. And yet, I also wanted to prove that you can still live your life every day, to the fullest you can. Well, these patients were brave enough to share their stories and struggles with the world, also. It was so uplifting to know I am not alone in my journey. And I feel as if they are standing up and saying, "Hear me! We Sjogren's patients have a story to tell!".

You can buy your copy of Tales From the Dark Side here.

And so, I will leave you with this.... Buy the book, you'll never know what you might take away from it if you don't! And my favorite line from the books says, "Courage isn't having the strength to go on; it is going on when you don't have strength." -Napoleon Bonaparte




Wednesday, December 25, 2013

Bells

Here's another favorite from the Christmas Claymation Special!

MERRY CHRISTMAS EVERYONE!!!





Monday, December 23, 2013

Claymation Christmas - We three kings

We sat down, with our daughter, last night to watch The Chipmunks Christmas Special.  It was loved by all.  It got me to thinking about all the holiday specials that were on when I was a kid that aren't on anymore.  I miss them and wish they would come back so my daughter could see them. I think one of my top favorites was The Claymation Christmas Special.  I just had to watch it every year.  Sometimes more then once if possible. My Mom and I used to curl up together and watch it. Oh, the memories.

Anyway, I went looking for The Claymation Christmas Special and found it on Youtube. Yay for Youtube!! One of my favorite scenes from the special was We Three Kings.  I just loved those adorable camels getting down while singing that song!  So I decided I had to share.....

 

Saturday, December 21, 2013

Ringing of the Bells



I got a chuckle out of this and felt like sharing it with you all!!  I dug up some others that I will sharing with you leading up to Christmas as well!!



Thursday, December 19, 2013

Christmas is Coming



This song always makes me smile when I hear it sung by the Muppets.



Tuesday, December 17, 2013

Baby it's Cold Outside



What a sassy little pig that Miss Piggy is!!

Merry Christmas to you and your family!!!



Sunday, December 15, 2013

Joy to the World (video)



I needed to post another funny Christmas video after putting my girly on the bus. A part of me didn't want to after the events of last Friday. I must have kissed her and told her I loved her fifty times before I let her get on the bus.

Anyway... I love these chics! :o)



Friday, December 13, 2013

Christmas Video



This was just too beautiful and amazing not to share with you all.

As fair warning to you all. I will be posting a zillion Christmas videos in the next two weeks. Because, well.... I just love the Christmas videos and wanted to share them all. :o)



Wednesday, December 11, 2013

Sleep

So I have been attempting to not use my Ambian every night. Sometimes I think it's okay. And other mornings I wake up knowing that I'll be going back to sleep as soon as I've gotten my girly on the bus. I have been alternating Ambian some nights. And the other nights I have been taking a combination of Gabapenten and Benadryl (which makes me sleepy but doesn't keep me asleep through the night).

I have to plan out what nights I take the medications. Often when I have taken the G&B combination I wake up the next morning and feel very groggy and almost feeling a little tipsy. Not a great feeling. And definitely not a way I should be feeling if I have errands to run or doctors appointments to go to. Driving in general.

I am still not 100% sure how this new "routine" is going well or not. I am left feeling constantly tired and my bone-deep fatigue is showing up more regularly now. Even after the nights that I have taken my Ambian. I feel like it's because my body isn't getting "consistent" nights of sleep in a row anymore. Add this feeling to the winter blues and arthritis pain that I get mid winter and I am just not really sure if the new routine will work. Makes me nervous. Though, I suppose, there's nothing to do but continue to try this. Maybe it will just take me a few months to settle into this new rhythm.



Monday, December 9, 2013

12 Days of Sjogrens

I've been posting this for the last few Christmases in a row and decided I better not break with "tradition". Enjoy!






In honor 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.

Saturday, December 7, 2013

Bleh

I woke up this morning with a creaky knee here, a stab of neuropathic pain there, and an achy back everywhere. I didn't sleep well and was looking down the barrel of my allergy shot appointment this morning, which means more pain is on the way.

The allergy nurse reminded me that I've been getting shots since about the time my seven-year-old-girly was two. I wonder how many years I'll have to continue the shots? Or the doctors appointments, or medications. The vastness of this disease, when you've been diagnosed at twenty five, is overwhelming in regards to the years left to come. It can be a anxiety ridden debilitating thought to have. One that would be much better swept under the rug than thought about for too long.

Fortunately, I have family and friends to keep me going. And especially my faith.

When I feel my thoughts sliding into the vastness of my disease I meditate on verses found in my bible. Phillipians 4:4-9 says....

Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.


I'll be thinking about both the directions and promise that these verses hold!



Thursday, December 5, 2013

Appetizer

 
ap·pe·tiz·er [ap-i-tahy-zer]  

1. a small portion of a food or drink served before or at the beginning of a meal to stimulate the desire to eat.

2. any small portion that stimulates a desire for more or that indicates more is to follow.

In this instance I'm choosing to use the second definition, in this blog post, to shamelessly promote a fellow Sjogren's blogger (and I'd like to consider friend albeit from several states away) and her newest accomplishment. 

Christine Molloy has been blogging about Sjogren's Syndrome since 2010, at Thoughts and Ramblings on Life, Love, and Health, and decided to put her talents to further use by writing a book. Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren's Syndrome. To celebrate I wanted to do a mini question and answer session, with her, about the book.

********************************************

Describe what led you to write this book?

I was initially planning on writing a different book that did not have to do with Sjögren's. But I was getting a lot of comments on my blog and personal e-mails from people who were reading my blog. People seemed to be looking for other Sjögren's patients to connect with and were eager to share information. That's when I came up with the idea to start this project. I wasn't sure if it would end up being a full-length book, but it did!

With the variety of books out there, on Sjogren's Syndrome, what separates yours from the bunch and makes it a "must read"?

Every other Sjögren's book on the market, except for one other, is factual information regarding the illness. Besides the one other book (SHOWgrins by Betty Collier), there is no other book that talks solely about what it is like to live with the illness.  There are also many more stories to read in Tales From the Dry Side, and the author has Sjögren's (me).

Do you have a favorite quote from the book?

I don't have one favorite quote and here is why: every story contributor was asked to start their story with their favorite quote; one that they feel represents their Sjögren's journey. I love all 13 of them!

Is there any commonality, with the people behind the stories, beyond Sjogren's Syndrome?

There is a common thread of the struggles many of us have had in getting the medical community to believe there was something really wrong with us physically and then obtaining an accurate diagnosis. There is also commonality in the ways it has negatively, and positively, affected our personal lives.

What do hope your readers will walk away with when they have read this?

Hope and awareness.

Any plans for another Sjogren's Syndrome related book in the future?

Very good question! In this first week since publication, I have already had other Sjögren's patients suggest another book with new stories and I have had people suggest a follow-up book to the current stories since they were written anywhere from 1 1/2-2 years ago.

On a lighter note, after all your hard work there must have been some celebration after your book was published, what did you do?

Well, my extended family wanted to do a celebration, but the book came out less than a week before Thankgiving and my life got very chaotic, very quickly so I asked them to hold off until after the holidays so I could enjoy it more. As a Sjögren's patient myself, I have to keep balance. My husband and I did celebrate over the weekend though!


********************************************


I cannot wait to get a hold of my copy of Tales From the Dry Side! I'll be posting a review once I've voraciously read through it! You can get your copy here.




Wednesday, December 4, 2013

Oh Holy Night

After my last post I thought I'd put a humorous spin on things....



Tuesday, December 3, 2013

Umm...

Chronic illness pet peeve # 63...

People who complain about a "fixable" pain, they are having for a brief period of time, but still can't see that a person with chronic illness deals with that same pain on a more "permanent" basis.

Just saying. I'll return you to your regularly scheduled program. :o)



Sunday, December 1, 2013

Christmas Village

 L and I did our yearly Christmas decorating on Black Friday. We decorate every year on that day. We love Christmas too much to wait!


The next day my husband and girly came home from the store with some goodies for our Christmas village. A strand of "star" lights! L was, literally, bouncing off the wall. Literally.

The little street lamps also glow. We bought them a few weeks ago. All in all we are thrilled with the little extra glow that they've added to our Christmas village.

My thought after this was all set up... Never underestimate just how big a little thing can be to someone else!






Friday, November 29, 2013

A Convo

The other night as the little wanna-be-tyrant tried to endlessly stall, I hit my patience quota for the day, and bedtime quickly degraded into this conversation...

L: Your casserole tastes like poopy.
Me: That's not nice! You don't say that to a person.
L: Okay. But it really does taste like poopy.
Me, ashamedly, stooping to her level: You taste like poopy.
L: Gasp! That. Is not very nice at all!
Me: Exactly. Neither is someone telling a person that something they made tastes like poopy.
L: Yes, but I have feelings. There are no feelings attached to that casserole.
Me: Very true, but it's still not nice to tell someone their casserole tastes like poopy. If you are going to insult my casserole you should at least do so eloquently.
L: What does that mean?
Me: Um, use better adjectives.
L: Again. What does that mean?
Me: Use fancier words!!!
L: Fine! Your casserole was disgusting!!!!

OMGoodness!!! I was VERY thankful for chocolate after my sassy girly was finally in bed!!! And for my ability to see the humor in this convo after the fact.Oh my goodness!!




Wednesday, November 27, 2013

Zzzz...

We got a new bed, finally! Prior to this we have had our mattress and boxspring on the floor. Which sounds absolutely horrible! However, it was wonderful for me as it made it much easier for me to get in and out of my bed due to my arthritis. We saved up, and found a beautiful platform bed, and bought it so I can still be close to the floor.

Hmm... This picture makes me sleepy. Maybe I can sneak in a much need nap before work. These new hours, thanks to the time change, are killing me!!




Monday, November 25, 2013

Wow

I was looking through old pictures last night and came across the picture on the left. Wow, what a journey! Looking at these two pictures together gives me some fantastic incentive!




Saturday, November 23, 2013

Fun

My hubbster took me away to a b&b for the weekend and left our little at home with the grandparents. I found these adorable pine cones in a country store nearby.

Friday, November 22, 2013

Disney Villan Nails

 I got a new sparkly nail polish today. As soon as L got off the bus she just HAD to paint her nails as well.
 Once she saw me taking a picture to share with all of you she insisted I take pictures with her nail polish job as well.
I have to say that I am in love with this nail polish. It does look like it but the base coat is a deep purple with blueish purple flecks of glitter in the top layer. My girly and I have decided that it looks like I have Disney Villan's nails now. What do you think Ursula or Maleficent?



Wednesday, November 20, 2013

Something Beautiful

I just had to share this with you because it was something beautiful in my day...





Monday, November 18, 2013

New solution?

I had a visit with my rheumatologist last week. It was an appointment filled with mixed feelings. One of the new things that she would like me to try is to not use Ambian every night.

Before I started taking Ambian I felt as if I never got a solid night's sleep. I never had too much difficulty going to sleep but I couldn't stay asleep to save my life. I tossed and turned all night long. I never felt like I got much restful sleep at all. I was always tired and felt my energy levels going steadily downwards.

Fast forward to current day and my rheumy has decided that I should try to not use the Ambian all the time. Instead I should double up on my Gabapentin, at bedtime, and see if that could help me at night time instead. I did this Saturday night and was less than impressed with it. Taking two of the pills leaves me feeling as if I have the flu. Which, isn't such a big deal since I go to sleep then. It did make me sleepy but I woke up all night long tossing and turning. The next morning I woke up feeling exhausted, slightly dizzy, and a little tipsy. I felt like I had one too many glasses of wine. This sensation stayed with me til about noon. It was pretty hard for me to go to church like that so I just can't see actually working, on a weekday, while feeling like that.

I am not at all certain that this will be my new solution to helping me sleep. Though, I am willing to try it again.



Saturday, November 16, 2013

Guessing Game

Can you guess what we watched the other night? If you guessed "Charlie Brown" you would be right! This little artist made me smile because of her skill this afternoon.



Thursday, November 14, 2013

Brain fog

Migraine.
Pounding head. Blinding light. Shaking all over.

Brain fog. I'm a teddy bear. Someone is trying to fill my head with cotton. They shove in cotton. And more cotton. Uncaring. More cotton. My head aches from it all and yet it gets stuffed with more cotton.

I can't think any longer. It's like walking through quick sand. It runs over my feet. I struggle. The harder I try to walk the slower I become. It's trapped my legs. Still I try. I am no longer able to move. I am unable to form thoughts.

I just consign myself to my fate until the brain fog slowly dissipates.

Motherhood. A simple word, but hard to act out in the grips of migraine and brain fog. My husband. Her Daddy, must pick up the reigns and do the work of both of us. Heartbreaking. Thank God for the free moments. The moments I am free of my symptoms. When I can be the mom and wife I am. That is me. The brain fog is not. That only lasts for moments compared to everything else. Because I have the last say. And it has no power here.





Wednesday, November 13, 2013

Ugh!

This past weekend it was in the high 50's. It was a fairly nice weekend. Today it's in the low 40's. The high of 52 was at midnight. The low is expected to be in the 20's. Yesterday we had some snow.

My body is killing me!!! And I am freezing. My body can't seem to get warm no matter what I do. Which causes my arthritis to flare up. Which makes me hurt, hurt, hurt.

Okay this ends my pity party for the day. :o)



Tuesday, November 12, 2013

A Corny Situation


Too cute not to share. :oB




Sunday, November 10, 2013

30 Days of Thankfulness 1-

I've decided to take part in the 30 Days of Thankfulness on my personal facebook page. I may add it to my SjoggieStAHMer facebook page as well. I want to do this because I feel like so much of our lives, as chronically ill can be spent thinking and obsessing over the negative things in our lives. And I'd like to think about the positive for a change. So, periodically, I think I'll add a post about my 30 Days of Thankfullness headlines.

My first few days were...

#1 I am thankful for an amazing opportunity to teach my girly that there's more to life than the "Me attitude", by having so much fun mentoring our Milton Hershey girls.

#2 I am thankful that a simple piece of cardboard and some toys (that she hasn't played with in forever) will keep my girly's imagination going for hours! :o)

#3 I am NOT thankful for the time change. However, I am thankful for my crock pot which allowed me more time and energy to deal with my cranky little girl! lol

#4 I am thankful for laughter. Something so simple can change your mood in a moment. :o) I delight in my daughter's quirky sense of humor which makes me laugh every single day. And I am even thankful for laughter when my husband and daughter know how to make me laugh, when I am mad, so they are no longer in trouble.

#5 Since it's my brother's birthday, I will say that I am thankful for him. Quirky and always marching to his own beat. I am thankful that he is building a relationship with my girly even though he lives all the way in Florida. I love that we can video chat with him.  

#6 I am thankful for caffeine and chocolate, which appears to be the only thing that helps me "go to my happy place", some days, while raising a strong willed child. :o) 

#7 In case it wasn't obvious yesterday. lol I am thankful for the great teachers Lorelei had/has. :o)

#8 I am thankful for such amazing parents, both mine and Tim's. They are there, for us, at a moments notice. We are very lucky that they live so close and that we have such great relationships with them. And Lorelei is incredibly lucky to have the opportunity to make so many great memories with both sets of grandparents.
 


#9 I am thankful that I have learned (through the last year) that living healthy is much better than being skinny! Because a skinny person can still be unhealthy, and what the scale says doesn't determine how much muscle tone you have. We've learned the value of cooking without most of the boxes of sides and preservatives. Also, not cutting foods out of my life completely, but choosing healthier foods after an indulgence. While I'm obviously not at the lowest weight I have ever been in my adult life I am at my healthiest (not including my health issues lol) and that makes me happy. :o)  



Friday, November 8, 2013

A Little Surprise

I came down, on Saturday morning, to find out that L had laid this all out for me as a special surprise. :o) I often do special little things for her "just because". So I love that she has started to do this for others. It makes my heart happy.



Wednesday, November 6, 2013

Ouch

My poor girly had an accident at school last week. Apparently, she was swinging on the monkey bars and Tarzan-ed herself right into the bar with her lip. I, secretly, think that the bar won this round. The accident brought on lots of  "awws" and snuggles. And her lip is almost completely back to normal now. :o)




Monday, November 4, 2013

Halloween Fun

I'm not very chatty today so I thought I'd share some pictures of our Halloween fun from last week...


My girly just simply HAD to be a pink power ranger or she was sure that she was going to burst into flames. Or suddenly dye an agonizing death from the deep disappointment of it. Her words. Not mine! My dramatically eloquent seven year old.
The fireman and police officers went through our neighborhood handing out candy. The kids were drawn to the flashing lights and delighted that there were handfuls of candy being giving out.
After leaf raking, there is leaf throwing. Always. Fact.
Pumpking carving was fun this year. I would love to share the picture I took of my girly pulling the pumpkin guts out but it showed a little too much so I thought I'd share the one of her shirtless, with her apron, and her jeans sagging off her hiney. Adorable!
Our Nittany Lion pumpkin glowing in the dark. I think I did a pretty good job on it.