Friday, July 30, 2010

What a Beautiful Morning!

This morning was amazing.  We actually stayed home for a change and we had such a great morning because of it! There were so many reasons why it was great. Things I heard, saw, talked about with "L" about, and things I thought about. I just felt like making a list of things I was loving this morning...

1.  The weather. The beautiful sun was shining down on us. It felt amazing sitting on the deck with it hitting us. It's only 80 today so the sun wasn't scorchingly hot for once.

2. My huge deck umbrella that shaded me and still let the right amount of sunshine flow languidly over my skin.

3. My gorgeous daughter's singing while she water colored in her princess coloring book on the deck.

4. "L's" love of big words. She thought this morning was "humongously fantastic darling!" Though admittedly they are not always used in the right context.

5. After saying that....I love the fact that my daughter is secure enough (or precociously cute if you'd prefer) to be calling every one darling at the moment. I admit at times it comes across as disrespectful.  When that happens I am quick to correct her.  But really who could hear a four year old say "Thank you my dah-ling" and not think it's adorable!!...Unless she's being mouthy! Ha!

6. The birds were singing in the trees this morning.  Maybe it comes from my years of camping with my family, I don't know.  But there is nothing so relaxing to me as hearing a Turtle Dove cooing in the tree above me.

7. The locusts were chirping in the thicket behind our house. Now that is a sound I most definitely attribute to summer time!

8. My husband who has been watching "L" by himself so much lately.  He's had "Daddy duty" quite a bit because I've been visiting a dear friend of mine in the hospital. And he'll be watching her again tomorrow afternoon so I can go use my birthday present.  A fabulous time at the spa with a friend.

9. My Parents who are watching my daughter tomorrow night so that my husband and I can spend the night at a B&B in the area. I cannot wait!  There's sure to be a post to follow about how fabulous it is. This years birthday has really turned into a birthday week!

10. My Mother-in-law who didn't quite get what I was telling her last night when I said that we were excited to go to the carnival ALONE. Despite the fact that I was annoyed with not being able to be there as just our small little family, I recognize that she was there because she loves our daughter that much and can't get enough of her.

11. The completely random stupid quotes that kept on popping into my head from the episode of Jersey Shore I watched last night.  Yes, I am ashamed to admit that I watch it.  Guilty pleasure!! Yes, it has to kill off a few brain cells while I am watching it.  But it's truly like a train wreck. You don't want to watch but you can't help yourself. And on this subject I'll end with this question... "Where's all the juice heads to creep on?!"

12. I got an amazing amount of bookstore gift cards for my birthday.  I spent them all within the first couple of days after I'd received them.  All the books came today.  So I was lovin' the UPS guy!  OK, so when I say lovin', I mean I was in the oh-you-are-so-great-to-have-brought-me-my-books-thanks-a-lot-way.  Not in the inappropriate way.  Besides he was not the stereotypical UPS guy you see in all the commercials.  Excuse me while I take a second to shiver in disgust!

13. My readers who left me all the kind comments, on here and other various places, after reading my post from yesterday!

Hope you all have a fabulous afternoon!

Thursday, July 29, 2010


I keep myself pretty busy.  Being a mom to an energetic four year old does that to you.  We are usually out running around doing something.  Playing with friends here, visiting friends there, out to lunch with Nana, doctors appointments, grocery runs, and even more play dates. When it's time for "L" to take her nap I almost always force myself to lay down and conserve some of my spoons (energy) for the afternoon hours. I usually spend the time reading.  Sometimes it's a good book and other times I am reading my fellow chronically ill (but not down for the count!!) blogger's posts. It's amazing how good it can feel to know that others are on the same crazy ride in life you are on. It helps me stay up beat about my own personal roller coaster ride. 

In June I had blogged about my constant mental and emotional fight I have going on, in my post When Life Hands You Lemons.  I see the classic angel and devil on the shoulders gag, in my head...

The devil is saying, " You should be doing so much more for your daughter than what you do. You are a bad mom. Get out of bed you lazy head and do something great with her!" *While he waves his pitchfork wildly*  

The angel is on my other shoulder is saying, "You do so much more than many kids get to experience.  You are a good Mom and use up more then enough energy on being a good Mom every day!" *While he angelically strums his harp*

It's a barrage of self doubt warring with remembered encouragement from friends and family. It's easy to tell someone to take it easy.  It's incredibly hard to actually do so. In the back of my mind I always wonder if there is more I could be doing that I am not because of my health.  And yet I have it so easy compared to some Moms and what they battle to do for their children on a daily basis. 

What does my personal conflict have to do with the blogs I read on a daily basis?  I'll tell you...One of my favorite blogs had a guest writer yesterday.  Ordinarily I would read it, either enjoy or dislike it, and move on. Not this time... This was written by a remarkable 10 year old named Hannah. She has the concern and privilege of growing up with a Chronically ill Mom. Hannah's insight into being a child who has a sick mom was amazing to read.  It truly touched me and made me realize that even in the worst of times, with my health, that I may not be failing her at all. I may in fact be raising her to be an empathetic, understanding, amazing young lady (like this writer), because of the journey my daughter will take with me.

So with out further introduction...Oh before you read, you most definitely should find yourself some tissues!!...I give you...

The original blog post can be found here.

My World with a mother who has lupus
Hi My Name is Hannah Patricia Jones ,
I am 8 years old and I have a lot of love in my heart because I have a mom that is sick with Lupus and some other Illness , I am sure if my mom did not have lupus I would still have a lot of love in my heart anyway because I am a child of god and my mom has taught me that no matter what comes in life to always hold onto your faith.
I do not know what it would be like to have a mommy who is healthy and I would love to see her get well soon and I pray a lot for that to happen , but there is no cure for what my mom has right now and it really makes me sad and unhappy at times.
I worry all the time that when my mommy goes into the hospital that she may never come home to me and my baby sister Gabbriella , I worry that when she wakes up she is going to be in so much pain and I have to help her the best way I can.
I worry that if I catch a cold in school and get sick that my mom is going to catch it and it could hurt her so much , I worry that me and my sister may loose my mom to lupus anytime or any day.
My mom says I have too many worries for such a young child and it breaks her heart , sometimes we cry together and just hold each other and make it all better, I wish that I could kiss my mommy and make it all better like when I am hurt or sick she kisses me and makes me feel warm and happy inside , you see she makes it all better and never gives up on us ever.
My mom is a great educator , she includes me in on so much and it helps me in some ways but scares me in others.
Her lessons on lupus can be frightening but she is very honest with me about how she feels and when it is a good day or a bad day , and what Lupus is.
I have a Nona and Pap Pap that are always here in our home starting in the morning after my daddy leaves for work that help my mom , but sometimes I have to be the big sister and take care of Gabbriella because mommy is just not strong enough to lift her and play with her the way my sister wants to be played with.
I never mind doing this because this is how my life is with having a sick mommy.
I have met a great pal named Kimberly and she has a blog and it has helped me and my mommy so much because we read things about lupus that make us laugh and not cry , we talk about the lessons we learn from her blog , you see my pal Kim has Lupus too.
My mom is in a group a few of them and it helps her get through the days and nights when she is not able to sleep at all , and I have learned that their are other Mommy's just like my mom and they probably have the same feelings that my mom has and this helps her so much , and it helps me to know that I am not alone and my mom is just like the other moms , she is sick but full of love, so you see my mom is like the other moms , but she is just like the other sick mommy's.
We can not go out in the hot sun and we have to take breaks through the day and I am OK with all of this because I love my mom forever.
My mom is a fun mom even though she is sick , we do arts and crafts and we read books and snuggle and we eat lots of yummy treats too and watch a lot of great movies and cartoons.
My mom loves me and my sister very much and though she is not in my school as a PTA mom or a basketball coach for my team she makes up for it in so many different ways , I have learned to love books and I am a wizard on the computer and I am always making something or drawing something and learning something new everyday.
My mom is a great teacher. That is what I want to grow up to be.
I love to play on my wii game system and I love playing with my baby dolls and my doll house , my imagination is very large because I am not outside all the time and running around the park like other kids my age , but it does not bother me , you see my mom is sick and this is all I know and it is not sad for me because my life is a good life , but I still wish my mom was all better , it would be nice to see her as the well Mommy's.
I have gotten involved in raising money for the LFA and the Butterfly Gala in New York in September , I did a walk in my neighborhood and raised money , and my mommy and I made $5.00 donation butterfly pins to give out to the big donors.
I have raised $75.00 on my walk and have gotten people to donate on Kim's blog for the education and awareness of Lupus and most important to help find a cure.
Reading Kim's blog made me want to donate my earnings I get for helping in the house and that is how this all became a big wish for me , to help other sick Mommy's and even daddy's that have this illness.
I am having a lemon-aid stand this weekend and it is called Lemon-aid for lupus , I want to keep raising money , I want Kim to go to the gala in a beautiful purple gown and have her represent all of the people sick with my moms illness.
I want more people to know that lupus is real and that it does not always have a happy ending and that more people need to know this.
I am a fighter just like my mom , you see I have aspergers syndrome it is called by my mom little professors syndrome because I am very smart and witty aspergers is a form of autism and you know what ? my mom found this out about me when I was 3 years old and right away started getting me all the help I needed so that I can be the smart little person I am today. My Mom is a fighter.
My mom never gave up on me and I will never give up on my mom ever.
Lupus does a lot of things to families , it can break them apart and cause fights , it can break a spirit and cause tears , it can break your heart and that can happen at anytime.
My family has been through a lot with my mom being sick , my mom says she will never ever apologize for being sick to an adult , because adults should know better , but she is always apologizing to me and my sister and I just want to say it is OK mom and we love you just the way god made you.
I don't need to go outside everyday and I don't need my mom to chase me in the yard or to play basketball with me to show me she loves me , cause I just know she does no matter what.
My mom and dad took us to Disney World in April , it was so hard on her but she did it and we had such a great time , it took a lot of spoons out of her , and the spoons are what we use in our home as helpers to see how mom is doing through the day , right now she is helping me write this and she is using a spoon , and she only wakes up with 12 spoons a day and has to use them very wisely you see , so Disney was a boat load of spoons and my mommy gave them all away for me and my sister , on the 4th of July my mommy took us to Kennywood Amusement Park and got very sick from doing that , she was up all night and still made sure we went to Kennywood , we stayed from open until close and my mommy was sick for a week after just one day with us out in the sun and walking around the whole day through.
These are things that show me that my mom loves me and my sister no matter what , she sacrifices herself for our happiness when she could just have stayed home and we could have done sparklers , NO my mom took us to Celebrate America at Kennywood and she did it out of unconditional love.
These are just a few reasons why I love my mom so much and how life is when you have a mommy sick with lupus , I don't know if this will help another kid like me , but I sure hope it does.
I would not trade my life for any other life because I love who I am because I love my Mom and because my mom made me who I am today.
I will be going into 3rd grade this year and I will not have my mom as a classroom mom , but what I will have is a note tucked into my lunchbox that says I love you Hannah have a great day mommy misses you , and that is enough for me.
If anyone ever has any questions in there minds about someone with lupus , they need to know that Love , Faith and Hope are what makes a person with lupus keep on being the great person they are.
I will keep praying for a cure and I will keep praying for all of you ,I will keep on fighting for you , God is Good that's what my mom teaches me and so I will stop on that note.
This is what it is like to have a mommy so sick and on a ton of medications and that gives herself fully along with her spoons everyday to me and my baby sister Gabbriella , Thank You Kim for listening to me and understanding what it is to be a child with a Mother who has Lupus.

All My Love xoxoxoxo
Hannah Patricia Jones

Monday, July 26, 2010

I Need A Nap!

Just had an outdoor play date at my house. Seven moms and their kiddos running around. We painted with food colored ice cubes.  I ran out of food coloring so I also made tang ice cubes.  The kids ended up sucking on them rather then painting with them.  Not that I'm really surprised by that!! I also had the baby pool filled and a tarp out to use as a slip-n-slide.  I don't think our preschoolers really "got" how to run and slide on it yet.  It was fun to see them run around on it though. 

We had some lunch. A good way to get rid of left overs from my party this weekend. The kids all managed to sit down for a short period of time to eat.  They were having too much fun playing to really sit for too long.

There was very little mess to clean up.  A little bit of food to put away and some toys in the yard.  That's the way I like it.  Also found out while cleaning that a friend is in the ER.  Here's hoping they can figure out what's wrong.  We're all antsy and dying to know that she's OK!

Now I am crashed on the bed, while "L" sleeps, hoping I get my energy back up for this afternoon.  We're going to buy a new car for ourselves.  It will replace the one that got hit a couple of weeks ago at a stop light. Gotta thank the insurance company for part of our down payment! Wish us luck!!

Sunday, July 25, 2010


What a busy few days! Wow!! Which would also explain my blog absence. Forgive me? Of course you do!  I'll catch you up anyway, so it's no biggie!

Friday I had a Mom's night out with my girlfriends.  It was soo great and much much needed as well. We went to dinner at Carrabas. Yummmm.  I had the best cannalonies EVER! I also got dessert. Even better!  

We all decided to go dancing afterwards. There were two choices of places to go to.  The first would be 2nd street where there are quite a few bars to choose from.  But also, abundantly overflowing with twenty year olds in all their glory. OK, I am not at all worried about my impending 30th birthday. (It's Wednesday!) Truly!  But what mom wants to be dancing next to a stunning twenty year old, with a hot body, while their "baby tummies" jiggle to the beat of the playing music?!? I certainly don't.  And most of my friends decided they didn't want to either.  So we decided to go with our second option and go visit the Hardware Bar.  I had never been but once we got their we quickly realized that there is a wide selection of people there.  We were ready to dance!!

The only downside to the dancing is that we ended up choosing one of the hottest nights of the whole blistering summer to do our dancing! I had a drink and half way through my second I realized that it was just NOT a good idea to drink anything other than water.  We were all sweating out everything that we drank within fifteen minutes of doing so.  I ended up chugging water all night.  At some point the heat and dancing got me and my body just felt like it was shutting down.  We all drug ourselves out to the deck chairs and collapsed. I could have probably fallen asleep while sitting there! My friend "F" took pity on me and drove me home early. 

I don't know if I ended up with a bug or if the heat just beat me up that badly, but I was sick alllll night long. My friends want to go dancing again in the fall when it's not so hot.  Sounds fun!  I will have to weigh the options though.  Here's hoping I don't get ridiculously sick from exhaustion.  Maybe I will just have to make sure that I have nothing planned for the next day to seriously conserve my energy. I  had a fantastic time, though. It was so worth it!!!

Yesterday we were suppose to be going to a friends birthday party.  We ended up at a surprise birthday party for myself. It was so great seeing everyone.  My daughter ran around like a hooligan with her friends.  she played so hard she was covered in sweat when we left. A bunch of my family was able to come and my husband invited a few of my friends as well.  The food was yummy as well as the cake. I got some amazing presents! I went home and used one of my gift cards as soon as I had some free time!  I think the best one would have been from my group of Mommy friends. They collected money to buy me a gift certificate to the Spa at Hershey Hotel.  I am getting a pedicure and a cocoa massage.  I get goosebumps of anticipation when I think about using it!! And better yet two of my friends are going along for us to have some girl time.  I can't wait!  Anyway, I felt so loved having everyone come help me celebrate my birthday.

Now I have to get back to some more photo editing.  I have been slacking off with that as well since I've had so much going on. So enough is enough, back to work I go!!

PS- If any of my friends care that their picture is up on my blog just "say the word".

Wednesday, July 21, 2010


Sorry I haven't written anything in a few days.  I've been busy with this and that.  

A friend of mine is starting a photography business.  We've made a team of sorts.  She takes the photos and I edit them for her. I love the fantastic photos that she sends me to play with. Most of the subjects are friends from our Mommy group. She's sent a ton of pictures my way to edit in the last day. Which I totally don't mind. Two photo shoots in the last week.  I get giddy seeing all the possibilities in the pictures! And can't work on them fast enough as far as I am concerned!  

While I don't have permission to post the pictures I am currently working on.  I do have a few I can post of past pictures that I have worked on.  Most of them are of my daughter, "L", of course.  Almost all of them have the faces blurred out.  It hurts my heart a little to mess up my pictures that way. But I want just protect the anonymity of the kids in the pictures. (I'm sure you understand!) Some of them have two pictures side by side.  The first would be the original version and the second one is the one is the final edited version.


Little Man


Monday, July 19, 2010

Dropping the Ball

"At some point you are just going to have to drop the ball"....

"L" and I went to visit a local retirement home today.  Our Mommy group does "volunteer work" there once a month.  We bring our kiddos in and have a craft time with the residents. Followed up by cookie time and a book reading. The kids love all the attention and the residents love to watch their antics. I must have been running around helping out more than I realized.  When I left I felt like I had hit a wall and my energy was just gone. It reminded me of a scene from a children's movie I had just watched. I felt like the rabbits in this little clip.


I was talking with my friend "M" this morning on the way out. And while I felt my energy draining we were talking of all the things that I felt I needed to do this afternoon at some point.  Change the sheets, schedule my Mommy group's play dates for August, play with "L", check my e-mail, make dinner, upload photos, etc. I was getting to the point of feeling overwhelmed when I turned around to see my daughter splashing, with her good church shoes, in a parking lot puddle!!! And as if that hadn't gotten to me she suddenly turned around full circle, like a dog laying down, and sat in the middle....the middle....of the puddle!!! It must have looked amazingly fun to her friend because she was perilously close to doing this as well. Thankfully that action was curbed by her Mommy, ending "L's" bad example for the day.

By the time I had collected my daughter from her puddle and walked to the car she had water dripping down her legs. My friend and I were finishing up our conversation when "L" found another puddle. I must have had an incredible mix of emotions on my face, each vying for top position.  "M" saw this and tried to intervene. Eventually I decided to just strip her bare and finagle her into her car seat while she was bouncing with frenetic energy. My friend looked at me and said, "At some point you are just going to have to drop the ball. You can't do it all."

I hate the thought of that.  I want to get everything done and still have the energy of a twenty one year old.  That's not my reality anymore. I know this.  It doesn't mean I can't try to do some of it!  But I did understand what she was trying to tell me. I can't be SUPERMOM.  I get it. So while listening to my daughter sing along with Alvin & The Chipmunks, while happily naked, I decided... I'm dropping the ball and calling for a movie afternoon! Thanks for the reminder "M'!

PS- Thank you to my readers.  I've now had over 200 views on my blog since I added the "hit counter".  It's so great knowing that people are actually reading my blog!

Sunday, July 18, 2010

Happy News & Great Pictures

I went away for a fantastic weekend and came home to find some happy news. I have been reading some blogs of other fellow chronically sick ladies (see bottom of blog page for a few I follow.). Some of my inspiration for creating my blog came from them. Since starting my blog I have found many others I love reading on a daily basis. In my searches for new ones I came across It's delightfully extravagant in it's information available to us "chronic babes"!  I have been addicted to this website since I came upon it about a week and a half ago. 

One of the fantastic things they offer is a Blog Carnival.  For those who don't know what that is...Blog Carnivals are a collection of various online blog postings on a specific topic or theme. It's amazingly refreshing to read what every one's takes are on topics that relate to chronic illness. They put up a theme and give two weeks for everyone to get their creative juices flowing.  The chronic babes write their blogs on the theme and send them on in to be considered before the deadline. 

So some of you might be trying to figure out why I would be telling you about this.  Some of my "quicker" friends will have already guessed that I decided to send in my blog post "Blessed" to be considered for their latest Blog Carnival.  And my post was added to it!  It's the first time that my blog has been shared outside of me personally sharing with friends. The first time it's been "published" for others. And I have to say I am pretty excited about that!

And here are a few pictures from my camping trip with family.... 

Wednesday, July 14, 2010

Captain Underwear!

So my daughter is going through a phase.  I know this, but it doesn't comfort me when I imagine her running around in her panties in ten years screaming, "Underwear!" She sure does keep things interesting around our house!

We played out in the rain this morning. Or rather, she played in the rain, I read under our huge deck umbrella. She spent two hours  decorating our deck with chalk and watching the rain wash it off. 

Thank goodness for those two hours!  She was... literally....lit-er-a-lly.... bouncing off the walls in our living room this morning.  At one point she was blowing one of these party blowers, to the left, at me while asking if she was annoying.  Every time she blew out it hit me right smack in the ear.  When I asked her to please stop, she graciously complied before promptly blowing it right before my eyes.  At that point I decided I NEEDED out of the house and it NEEDED to be a case of instant gratification! Otherwise I was picturing myself tying her up to her train tracks and playing Evil Knievel with her match box cars! would have made for some fun pictures anyway!

While outside I was entertained with my daughter's very own rain dance.  It wasn't any ordinary rain dance, just in case you were wondering.  I was told it was a magical rain dance. This was said to me in a voice filled with all the awe that a four year old can muster.  Then she proceeded to do a jaunty little wiggle around my chair while chanting "rain" and making animals growls.  She was half bent over, her hands were curled into claws, and her little hiney shook behind her.

Anyway, all this brings me back to underwear.  I took off "L's" wet clothes once we got inside. She wrapped herself in a towel and ran for the living room.  One would normally assume that their child would most likely be furiously drying themselves off while watching their shows.  In my daughter's case you would be...WRONG! So so wrong. I momentarily forgot "L's" unholy love of being naked.  How silly of me!! I came back into the living room to find my daughter hopping across our couch cushions.  The towel was forgotten on the floor, the dogs were curiously watching and smartly staying out of her way. (Which I was fervently wishing I could do at that moment.) She was making some kind of crowing noise, like Peter Pan, and screaming, "UNDERWEAR!!!" at the top of her lungs.  I am still wondering what has happened in the last few months to give my daughter such a crazy love of being naked and the word "underwear"?!? At least I don't feel so alone in this, curiously enough, I know of at least one other friend who is similarly confused by their daughter's fascination with this.

And now that I've left you with the hilarious mental images that are sure to follow.....I will be MIA for a few days while spending some time with family! Here's hoping I am not too drained and not hurting too bad. But who's wishing.  If you happen to see my fairy godmother lurking in any corners send her my way, please! Til' next time..."UNDERWEAR!!!"

Photo found at

Monday, July 12, 2010

No Pets in the Hotel

I've been in a bad mood today. I just feel a little burnt out and irrational at the moment. Nothing to worry over.  I am fervently looking forward to camping with my family at the end of the week.  No worries beyond what to do next to keep my daughter occupied for another twenty minutes.  There will be lots of memories to make and plenty of pictures to take!

Anyway, in an attempt to cheer myself up I came across this hilarious comedic sketch! Hope you think it's funny as well!

Saturday, July 10, 2010



There are times when I feel down.  You know those "pity poor me" moments in life?  Exactly! Every one has that feeling at some point or another.  It seems that recently I've been more focused on how my health is effecting my life than I may have been in the past.  The summer has been hotter so it's hitting me a little harder than usual. So while I've been concentrating on maintaining my "spoon level" life has still been going on around me. At times, I've wanted it to slow down so I could catch up. At others I wanted to speed up so I could get past a rough spot. I am one of those people who sometimes need reminders to slow down and just enjoy the little things.  Smell the flowers, notice the cloud shaped like a dragon (seen by my daughter of course!), or taste the way chocolate ice cream melts so creamily in my mouth.

My daughter's birthday party was definitely a reminder that I need to stop being so insulated and open my eyes to the very real truth that I am blessed no matter what my health diagnosis for the day is. I have fantastically supportive parents and in-laws who are willing to drop everything to make "L's" birthday special. She felt that she was the only little girl big girl in the whole entire world to ever have had a birthday as spectacular as hers was. To them she just lights up their world. And there's just no way that she would ever doubt that. She could not ask for more loving grandparents who are willing to have tea parties, imagine they are in safari's looking for monsters in far off places, take her swimming when it feels like it's a hundred degrees out, or take her to the 3D showing of a movie because it will just make it more special for her. In them she could ask for little more. And if she could ever find that little piece that would make it impossibly better, they would find a way for her to have her heart's desire!

In my friends I have an amazing family.  They were there with me all week with offers to help clean my hopelessly dirty house for "L's" party. They were there offering last minute grocery store runs as well. We sat in a dark movie theater whispering and giggling through a movie like teenagers, while our husbands looked on and shook their heads.  Each has something to offer "L" that I would fall short of.  My friends never cease to keep conversations interesting.  And have kept me sane on sooo many occasions.  They have become aunts and uncles to my daughter in ways that I couldn't have expected. Today's birthday party made "L" feel incredibly special and wholly loved. I can't even begin to describe the look of pure joy on her face when everyone sang her Happy Birthday.  To my friends who read this blog whom were not able to be invited...I am deeply sorry that our house isn't bigger so we could have included you in our celebration! You were missed. Truly!

My daughter is totally and completely a true gift from God. She was the perfect little baby to add to our lives. She makes me see things in new and exciting ways. And she never stops amazing me with her beauty, compassion, and sense of humor! On our worst days together she can always find a way to deflate my frustration and crack me up. I could just go on and on about her so I will stop myself at that.

In my husband I have found another incredible gift from God. He knew exactly who to send into my life.  We have been through many things together. Health scares, family deaths, cancer, my pregnancy, and a couple of other things.  I think we have been thoroughly "tested" and come out closer because of it. He works hard for our family to support us.  I can't thank him enough for giving me the opportunity to stay at home and raise our daughter. "L" has a great father in him, and I have a great partner. He takes on more than his fair share of the load at times to help me stay strong.  Again, I could go on about this so I will stop myself.

Now that I have gone on so long about the things that are leaving me to feel blessed, I will end on a more light-hearted note. Here are a couple of pictures to share from this past week...

Here is a picture of the dragon cake that I made/. I was pretty happy with my achievement.  After all it was the first cake that I had ever make that wasn't a classic size and shape!

Here is a picture of it with it's wings. The previous royal icing wings shattered while I was trying to trim the shish kabob sticks they were attached to.

Some of my royal icing work.

My daughter on her big girl bike. She was "in heaven" riding it! And of course the ensemble is not complete with out the Dora the Explorer bike helmet!

This is "L" looking out the window for her first friends to arrive. Seconds before she had said, "I want to get my party on Mommy!" Notice the "viking helmet" party hat she is wearing! Classic birthday party wear for a "How to Train Your Dragon" event.

Thursday, July 8, 2010

Happy Birthday Baby!


I am sitting here watching my husband put together a bike, because that is the ONLY thing that my daughter wanted for her birthday.  It's pink and covered in pictures of the princesses. Even the training wheels and pedals are pink.  And of course no big girl bike is complete without the bell and pink/white streamers! She's four today! She's convinced herself that she is "officially" a big girl now. So of course once you "officially" become a big girl you need a big girl birthday gift. That's just the way it works, right? Yeah!

Whenever "L's" birthday comes around I always end up reminiscing about what it took to get her. As I am sure most moms do on their children's birthday. My first trimester brought with it a whirling bout of Vertigo. I was also one of the lucky ones who got "morning sickness" around the clock.  I lived on crackers and ginger ale. The blessing in that is that I only managed to have it for three weeks. As my husband says, "it's the only thing I did get lucky with".

My second trimester saw me dealing with Carpal tunnel and Costochondritis. For those who have not enjoyed a date with Costochondritis, let me recommend against it! I was in the ER, for visit number one, for twelve hours while they did every test imaginable. Costochondritis leaves you feeling as if someone is stabbing you in the chest every time you breath. The only thing they were willing to give me was ibuprofen, which of course a pregnant women can't have. I did have a few weeks in the second trimester that I felt great for at least. 

One morning in my third trimester I woke up and couldn't feel my mouth.  Which heralded in the Bell's Palsy that I wrote about in a former blog. A couple days later I had my second ER visit when I began to have problems breathing.  The verdict was that I was just too swollen everywhere.  A great thing to hear your doctor tell you, when you are pregnant, by the way.  Thanks you very much doc, that's just what I needed! So that began my bed rest. My family got to work making meals for us.  I had movies galore sent for me to watch.  And my husband managed to borrow a laptop so I was able to busy myself online. At the end of the pregnancy I developed Preeclampsia as well. My third visitto the hospital, was because of a continual headache, which ended up being my last.  They kept me and decided to induce me four weeks early. 

I didn't have a truly terrible labor.  Half of my epidural didn't work, but some women choose not to have any.  So I really shouldn't complain about that. I had to have magnesium to prevent ceazures because of the preclampsia. You have to go through a with drawl period I didn't get to eat for what seemed like forever. My husband and family took to eating their meals frantically in the hallways so I didn't have to smell their food. 

It turned out that I did have a pregnancy full of complications but none of it touched my daughter.  She was born perfectly healthy and beautiful. I jokingly call her my seven pound preemie! Given all that I had to go through for us to have a baby....I would easily do it all again for her! She is the best thing, next to my husband, that has ever happened to me. She makes me want to be a better person. The kind that a daughter can look up to and want to be someday. A Godly example, soccer mom, cookie maker, craft project making, someone to tell secrets with, hero.  

I am going to go wake up "L" and give her her first birthday card of the day now.  As well as an incredible hug because those are already coming few and far between! In the last few years there have been times that I was so excited to see her do the next new thing. Someone told me that "The days are long but the years are short". At four years old that seems to be sooo true.  Though I know it will be even more so in years to come. She's not my baby anymore! OK, enough with the emotions! I'll leave you with a song that I wrote for "L" as a baby, every once in awhile I sing it to her while she'll still let me...

Sing me a song little monster girl, 
And I'll tell you every thing's right.
'Cause the world's filled with chocolate and lolly pops,
And your future's looking bright!

You've got a Mommy who loves you,
Daddy loves you just as much.
We're all a little happy family,
And you were the perfect touch!

PS. We used to call her "monster" because of how she grunted when she drank her bottles. I can't have you thinking that I went through all of that just to call my baby a monster!! C'mon you know you were wondering!

Tuesday, July 6, 2010

The Mogwai

It's 98 degrees today here in Pa, and I am miserable in it!  I am desperately trying to stay out of the sun and heat.  That got me thinking about how having Sjogren's is like being a Mogwai from The Gremlins movie. Don't ask me how I made that jump in thought.  That kind of thing happens to me all the time!

If you are in your mid twenties, thirties, or the respectfully older crowd you may remember the classic 80's movie The Gremlins. My family watched the movie every time it was on TV.  I do mean EVERY time! My brother and I could quote the movie word for word when we were kids. 

Anyway, they are undeniably cute and furry.  They tend to be so mellow at times you could almost forget that they are there. Then when you least expect it, somebody comes along to feed the Mogwai after midnight and they turn into Gremlins on you just like that! 

*snapping fingers*

Eventually my Gremlins will fade away and turn back into the Mogwai again. Until then I am left to make lists to keep myself entertained. So I give you 7 similarities between my Sjogren's symptoms and the Mogwai....

 1. Gremlins have some crazy teeth... Though it might seem silly to think that we Sjoggies have to worry about our teeth more than "normal" folk, this is true. Because we generally have less saliva in our mouths, due to our degenerate salivary glands, we have a much higher chance of getting cavities. As my dentist explained it, the saliva in our mouths acts like a coating on our teeth and makes them slippery. With our teeth being slippery it is harder for germs to attach themselves. So it goes without saying that if a person has less saliva then they also have less protection against cavity causing germs.  Wish I could have Slimer's teeth!

2. They cannot eat after midnight... This timing could really be moved up to eight o'clock for me. Any food that is eaten by me after that time just bursts into a crazy case of heartburn. Usually this also comes with back pain. Back pain can be a common symptom of GERD.  Which I have thanks to a side effect  of an anti-inflammatory medication I have been on. It's certainly no Pretty Woman story!

3. Mogwai are repelled and injured by light... It seems that no matter what SPF I use I always get sun burn. I usually have on SPF 50 (or higher) as well as my sun visor at all times while I am outside. And I always need my sunglasses. Yes, there are days that I look like a seventy year old woman. But I have come to realize that it's a necessary evil while outside in the sun. At least I won't look like E.T. some day!

4. Once the Mogwai’s internal clock says that it is time to eat, the Mogwai may become hungry.  This process triggers the start of the metamorphosis... You sooo do not want to be around me once my blood sugar has dropped! I morph into a truly evil creature willing to rip through downtown sky rises to get to some food into my system. I become a force to reckoned with and need to find food quicker than "The Back to the Future" Delorian.

5. The Mogwai grows rapidly in size... The heat makes me swell horribly. I look at my fingers and think of the Stay Puft Marshmallow Man from Ghostbusters. When that happens I try to pry off my wedding rings and glance longingly at them as I pass by them throughout the day.

6. A Mogwai want to seek out water as quickly as possible... As much as possible I carry a bottle of water with me wherever I go.  I am thirsty constantly so I am always drinking. Water is definitely one of my top three things I need for traveling especially.  The other two being hand cream and my special chap stick. Fortunately for me I don't act like Long Duc Dong after his night of drinking!

7. Their fur falls out... Fortunately it is not a constant thing but, yes, my hair falls out. There are days that I feel like the bottom of my shower looks like I've invited Chewbacca to use it!

So I hope you enjoyed the comparisons and the eighties movie shouts outs! I got a chuckle thinking of the similarities. I hope you did as well. And if you didn't, I'll leave you with one more..."Hasta la vista Baby!"

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Monday, July 5, 2010

It Was Worth It!!

This weekend I took "L" camping with my parents and some family members overnight.  (I've added some pictures from the trip.) We had a fantastic time.  The weather was perfect, the company relaxing, and the activities were fun.  I came home feeling tired but not too bad for what I could have felt like.

Saturday night we went over and spent some leisurely time with friends while our kiddos played.  We had pizza and chocolate chip cookies for dessert.  I watched my daughter and her friend run frantically through a sprinkler.  That was the highlight of the night. Or it could have been when "L" called, "Come this way to get out of the water Love", while speaking to a friend.  It just melted my heart. I came home feeling a little more tired.

Yesterday we did all the Fourth of July festivities.  We went to a family picnic all day.  I think  my daughter spent all but half an hour in the pool of the five hours we were there. There were many yummy goodies to choose from for lunch, great company, and it's always great to see "L" having so much fun.  I came home from that feeling really tired!

Last night we took our daughter to see her first live fireworks.  We met up with some friends and had ice cream in a Friendly's parking lot while waiting for them to begin. I think "L" had more fun dancing and playing with her friends while she watched the fireworks then she had had all week.  She was so excited, I swear, she didn't stop talking throughout the entire fireworks show! It was super late so she was going on the I'm-way-too-tired-and-I-don't-want-to-fall-asleep-while-standing-here-tired-energy. It was pretty funny to watch.  And of course for me the fireworks were fantastic because watching the awe on my daughter's face made them new all over again.  I love that part about being a mom! 

I came home last night feeling the effects of the wh-o-o-o-ole weekend.  Which, in no particular order, would have been; exhausted, hurting, sun burnt, and swollen. I can't seem to pry the rings off my fingers, which usually means that I "partied" too hard and need to "check myself".  Of course I was way too keyed up to fall asleep when I got home last night after all the excitement.  So I was checking out the Sjogren's support group on Facebook.  It's a great place to go when I am feeling frustrated.  It helps me feel as if I am not all alone and imagining things.  It also brings me back to reality with the realization that I have it "easy" as far as chronic illnesses go. I ran across a fantastically funny, new-ish, blogger.  

I found a great article on this blog that in my opinion is so helpful in describing what it feels like to have a chronic illness. I have had friends ask me what it feels like and my description always seems to fall a little short of the mark. I see the arrow hitting just outside the red circle on the target. Usually I say that I feel as if I have mono all the time.  Adding to that feeling is achieness, similar to the feeling you get after you've just done a killer workout. Anyway, I have added this link to the article. I hope it helps explain a little bit better.  I found it on So here is the article... Spoon Theory

Now I am going to go wake up my daughter.  Yes, she is still sleeping at almost ten this morning after staying up as late as she ever has.  The rest of my day is going to be devoted to laying around and trying to get my energy level back up.  I'll end up playing some games or coloring on the couch with "L".  We'll probably pop in a movie to watch at some point as well.  And I will definitely be trying to get these, in the words of Yosemity Sam, "wrecking, frecking, flim, flam" rings off my fingers!