Thursday, April 28, 2011

Apache Ice Cream Scream Part Deux...

The weather has been fantastic this week, as my post yesterday can attest to.  It's been full of thunderstorms, which is not great.  But I am totally willing to overlook that since the rest of the time has been over 70 degrees and sunny. L and I have been spending as much time as possible outside. I think unconsciously we've been trying to make up for all the sun we missed out on this winter.

Since Monday we have been, not so patiently, waiting for the Ice Cream Man to make his first appearance of spring. The weather has been perfect as if begging for just a moment of that tinkling ice cream song. Every time we heard any loud noises out front, from vehicles, L would go running to no avail. Tonight we had finally given up on the ice cream man. Or so I thought.

I was in the kitchen when we I heard the first tinkling note of the ice cream man's. I hadn't even lifted my head to hear it before L was headed for the front door. Apparently, she had still be waiting. She let out her loudest Apache ice cream scream yet. She finished it off with a plea of, " Mommy get my piggy bank!! Ice cream man, wait!!!" as she saw him slowly driving by. But that wonderful ice cream man must remember where the suckers live. As we left the house, with the screen door banging behind us, we saw the ice cream van waiting with the eyes of the ice cream man looking at us in his side mirror. He is so on to us! Yes, my daughter is insane about him! At least I can say it's a two way love affair.  She loves his ice cream.  And he loves the money he gets out of her seconds after the first note of his pied-piper-ice-cream-song is heard.

These nights, courtesy of the ice cream man, will always be special to me.  We have some fabulous conversations while, we are making time slow down, eating our ice cream. Oh, to be young and only have to worry about the next visit from the Ice Cream Man!

Wednesday, April 27, 2011

I Love You Mr. Sun!

 Thank you God... For the beautiful day and friends who play. For the gorgeous flowers and these warm sunny hours. For friends like a sister and the love of my Mister!
It's been so beautiful and sunshiny the last few days.  I am soaking up the sun and warmer weather.  I can't help but be in a great mood when the sun is shining down on me after so much rain. 
But, wait it gets better. After suffering and being exhausted on Sunday after taking my Methotrexate, I have not really suffered too much since.  I am still experiencing my swelling and pain that comes with my Sjogren's.  But I haven't been exhausted or nauseous as I was the first two weeks. Definite plus in my book!!
And if the sun, and good week with my new meds wasn't enough... I just noticed that my eyebrow is now moving some more.  I know that sounds completely crazy to those who have not read this blog post.  To give a brief explanation, I had Bell's Palsy and the left side of my face was paralysed. I have never regained full use of my left eyebrow.  I can totally pull the neat eyebrow trick that The Rock does on WWE! Anyway, slowly I have noticed improvement over the last four years. My docs seem to think my body is too busy "worrying" over my auto immune disease that it's not capable of fixing itself quickly. OK, so back to the present. I noticed today that the corner of my eyebrow, directly over my nose is moving up and down now! (The area is pointed out by the arrow in an older picture.)You guys! That's a major step in the right direction. Not to sound stupid, but my hope is that in the next four years I'll have regained complete use of my eyebrow.
 I am thinking, "Small steps, Kristen, small steps!".

Easter Dress

I was talking with my daughter today about her Easter dress. Apparently, she wanted to know why I hadn't put a "good" picture of her dress up on my blog post.  So, with the face strategically blurred out, for you L...

Monday, April 25, 2011

Easter Fun!

I've been a little too busy this week to actually get to sit down and write out a blog post. So I figured I would just post a few picture highlights of the week!

Egg hunt one.

The bounty!

Fun with Easter gifts.

The Easter bunny was generous here!
Cousins sharing secrets.

Egg dying of course!

Cookie making with some friends.

Easter egg hunt number three.

The Easter bunny had some tricky hiding places at this house.

Trying out the twirl in her Easter dress for church.

Finished eggs.

Egg hunt number two.

Monday, April 18, 2011

It's My Party And I'll Cry If I Want To!

Welcome to my pity party.  Writing this all down really did make me feel better!!!

I'm tired of...

...Being nauseous all the time.

...Being hungry all the time.

...Taking medication.


...Going to so many doctors appointments.

...Not being able to sit on the floor with my daughter.

...Hurting after sitting on the floor for more then five minutes.

...My husband having to pick up all of my slack.

...Having no energy.

...Living in a crazy house because I have no energy to clean.

...Swollen hands, toes, and knees.

...Painful lymph nodes that swell, go back to normal, and swell again through out the day.

...Having to choose activities. Why can't I have the energy for all of them?

...My hands randomly going to sleep on me.

...Feeling like I'm a thirty year old stuck in a fifty year old body.

...Worry and anxiety.

...Sleeping for ten hours and waking up no more refreshed then if I had only gotten three hours.

...Having to deal with pain every day.

...Wishing for a new body.

...My negative attitude.... Things could be so much worse!

Wednesday, April 13, 2011

So Proud!

We have been bugging L for months to get her haircut.  It's gotten pretty long and it's so thick that it was a fight every day to brush it. Not to mention the fact that she hated that I had to put it up all the time. But get it cut? No! She dug her feet in and resolutely decided she was NOT getting her hair cut. Until.... one of her best school buddies came in with a new hair cut the other day. Suddenly, the thought of getting her hair cut seemed exciting.

Today I took her in to get her hair cut. She went into the salon with a very firm idea of what she wanted, a bob cut to her chin. When the hair stylist combed out her wet hair she mentioned that L's hair was long enough to donate to Locks of Love.

For those who have not heard about Locks of Love let me just say that it is a great non-profit organization! All of the hair that is donated to this program is made into wigs for children who suffer from different illnesses. Such as alopecia, cancer, different genetic issues, and some who have suffered sever burns or traumas. You can see before and after photos here of the children who have received hair prosthetics from LOL. 

When L heard that all she had to do was give up another inch of hair to be able to donate she readily agreed to it.  I was awed by her selflessness in giving up what she wanted so, as she said, "Another little girl could have a ponytail.". As parents we try to teach our kids to be giving. That the world does not revolve solely around them, as much as they would like to think it does. It doesn't always work that way. To actually see my girlie thinking of someone else was amazing to me.  It nearly brought tears to my eyes!

Tuesday, April 12, 2011

In Which I Discuss An Interesting Conversation...

At times when I am in a conversation about what Sjogren's feels like on a daily basis, I have encountered what seems to be a "disconnect" in some people. Whether it be that they would rather pretend that everything is normal with me to help themselves deal with it. Or often times a person has no real reference in their own lives to pull from to help them understand. It's hard for a person to "get it" when they themselves have been relatively healthy all their lives. That leaves no real compass to assist in discerning what I am dealing with. So I find myself watering things down for them. "No, my body does not hurt horribly today.  I can still hold my book up to read for very brief periods of time.  Sure, I can do that volunteer work.  I will only be exhausted tired for days an hour or two. Yeah, let's go into one more store. I have plenty of energy left to get me as far as to the couch so that I may collapse upon it!"

This all leads to a conversation that my husband and I had last night. T was playing devils advocate with me. Do I keep certain aspects of my health away from some people because I am protecting them or sheltering them, as some might say? Or am I really holding a piece of myself back from them?

I would like to believe that I am a fairly transparent person. What you see is what you get. I could never become a politician who's very job requires some form of deception on a regular basis. So a part of me cringes at the idea that I might be holding out on my friends. After all the very reason why I started this blog was to share, with friends and strangers alike, and get the word out there about auto immune diseases. I am left pondering this question. So many thoughts are running through my head, arguing for both sides of this conversation, that I find myself unable to continue with this post.  Perhaps I will revisit this post at a later date because I seriously dislike this writer's block feeling that I am getting!!

What is your take on this? Am I protecting people or holding back when I "water things down"?

Saturday, April 9, 2011

Saturday Morning Confessions...

#1... I love love LOVE my sleep! Not much is better on a Saturday morning then curling into my fantastic bed, snuggling beneath my pile of blankets, and drifting off. Or even a Saturday afternoon nap! I will willingly forgo all the things that I could be doing on a Saturday morning to sleep in. Breakfast in bed? Nah, I'd rather be sleeping!

#2... I am starting Methotrexate tomorrow.  I have heard that this can be wonderful for some people's arthritis. But I've also heard that it can be horrible to get used to.  Nausea, "toilet time", dizziness, hair loss, loss of appetite, and confusion are all some of the delightful things that I could be looking forward to. Yay! That isn't what makes me nervous, however.  What makes me nervous is dealing with these side effects while still maintaining my level of activity, ie; fun with my girlie. I've said it before and I'm saying it again. I don't want what I am having to deal with health wise to effect my daughter too much.  I am hoping that whatever side effects I deal with now won't force me to stop being the awesome mom that I try to be. I know, so humble, right? Ha!

#3... I covet any prayers that may be sent my way in regards to this new medicine.

#4... No matter how exciting or mundane they are, I am always excited to go out with my husband, by ourselves, for a date night! Whether we go grocery shopping or to a fancy restaurant, I love spending time alone with my husband. I think that after seven years of marriage and ten years together that that is a great thing! That being said, I can't wait for our date tonight. We'll be going to a wedding. Duhn duhn dun dun... Or should I that be KRISTEN and T sitting in a tree. K.I.S.S.I.N.G?

Tuesday, April 5, 2011

Rainy Day Blues?

We didn't have our play date today but I made up for it.  I got L dressed and took her out in the rain.  The rainy day blues? Not so much, when they cheer up my little girl instead.

We went for a walk. In the rain. Fat rain drops hit our umbrellas as we walked straight through the mud in our front yard.  The worms said hello as we watched them crawl lazily away. We got to the other side of the road before we hit a huge puddle. It was massively rippling across the neighbor's parking spots. My daughter just had to splash through. Over and over and over again! Which would have been great if she had actually been wearing rain boots. No, she was in her snow boots.  They work great to keep her feet relatively dry while in the snow. However, they are not impervious where plain old rain is involved.  When she mentioned that her socks were soaked, when we came in side, I laughed about it.  I just assumed she was being dramatic.  Until I picked up said socks and had water running down my elbow because... the socks were that soaked!

And no fun outing would be complete without a few pics to share. Enjoy!

Monday, April 4, 2011

So Tired!

I was supposed to be having a "camping" play date tomorrow with friends. I planned on setting up our tent in the living room.  There was a fake fire built with paper towel rolls and red/yellow tissue paper.  And I had "camping" food planned for lunch.  The crowning moment for L was the smores we were planning on making in the microwave. She was SO excited.  And now I have the misfortune of telling her that I cannot have the play date.

I have no energy and a million and one things that need to be done or cleaned before I have people over.  Seriously, no energy!! Unfortunately, I feel like a useless wet noodle today. Which means that no cleaning will get done and the house is a mess. I feel horrible making L miss out on playing with friends because of my exhaustion. I am hoping that I will have enough energy to still be able to set up the tent for her.  Maybe that will make up for me not being able to have our camping play date. Forgive my negative thoughts for a moment while I say, having a chronic illness sucks!