Tuesday, March 29, 2011

Kindergarten Registration

Image found here.

I took L for the "official" registration at school today.  Or, as L says, "her kindergarten reservations"! We were prepared with all of our paper work. She was so excited that she reminded me of an excited puppy. The school nurse came to talk to her.  Then she told L that she had to take her into a room with out me.  I hadn't prepared her for that part.  Admittedly, I totally hadn't even thought about it. I could tell my daughter did not want to go off by herself.  She hid behind me and reluctantly followed me to the door. I was afraid that she would put up some resistance when she had to leave the room.  L made me proud, however.  She bravely took the nurses hand and resiliently walked down the hall. As the door was shutting I saw her take one last bracing look at me.  My baby was so nervous and she had to face it on her own, without my help.  I could read it all over her face.  The confession of the day is that it was almost as hard for me. I am sure that does not come as a surprise for other moms out there who have had to endure that "helpless" feeling under other circumstances.

When I went to pick L up the speech therapist came out to let me know how everything went.  She told me a few things that she noted, which I was aware of.  At the end she asked if I had ever noticed my daughter having issues expressing herself.  I laughed at her.  I didn't mean to, honestly!  But I was so surprised by the question that it just gurgled out of me.  By the time I got over my surprise, and realized how funny I thought this was, it was too late and I was laughing.  Once I choked back my mirth I made sure the therapist knew that L had never had a problem expressing herself.  I had really really wanted to add that, in fact, my husband and I couldn't seem to find a way for L to STOP expressing herself! Fortunately, I had gotten a hold of my faculties by this point and managed to keep quite and nod at whatever the therapist had been saying to L. Woo boy, was it ever hard!  I didn't think, however, that the therapist would find it funny if I had said that to her. She seemed to be taking everything VERY seriously.

Once we got out to the car L and I realized that this was "for real"!  We stopped and said a quick prayer of thanks to God.  And then, we couldn't help but do a little "Yay L is officially signed up for kindergarten dance".  She got down with her bad self.  She was so proud! I hope I've sealed that little dance of hers away in my head to view later.  But, to anyone in the parking lot we probibly just looked like we were having simultaneous seizures!

Monday, March 28, 2011


For the past few weeks I have been dealing with some major swelling issues.  It's mostly my hands and feet that have been swelling.  I have finally managed to fit my rings back on to my fingers.  Most definitely a plus! Occasionally my knees have felt swollen as well. I have been setting my priorities and sticking to them. Which has meant a smaller amount of blog postings. Oh, the joys of an auto immune disease!

Mostly setting my priorities is just annoying.  When it starts to make me want to scream is when I start swelling in weird places.  Today it looks as if a bee came along and stung my upper lip.  Why? Why has my lip decided to swell?!? I'm not sure of the answer to that.  In the meantime you'll have to excuse me while I go have a temper tantrum to rival my daughter's!

Wednesday, March 23, 2011

Free Fashion Advice

Someone help me! I am apparently starting to take fashion advice from my daughter!! She looked at me tonight and said.... "Mama, you look stylish in what you're wearing. But you'd look even more stylish if you changed your pants." Without even questioning myself, I went in and changed.
Wow... A vision of what the next 18 years will bring just flashed before my eyes!

Sunday, March 20, 2011

Defining Moments

I was reading something recently about defining moments in a person's life. Unfortunately, I cannot remember where or I would be giving credit where it's due. Anyway, it made me think about whether I have had any defining moments in my life. Any moments that suddenly made me fully aware.  A time that brought everything startlingly into focus for me. I realized that the one moment that comes screaming to the front of my thoughts would be the first few moments that I held my daughter in my arms. Sounds cliche, I know. But the story behind it is less blazĂ© then it may sound.

My pregnancy was NOT a good one, to which this blog post has already testified to. I enjoyed it for about two months in my second trimester. I know that sounds terrible, but it's the truth. By the end of my pregnancy I got Bell's Palsy. Half of my face looked like it was sliding off my chin.  I literally had to be conscious of every bite of food I took to make sure I didn't have food leaking back out.  I had to "teach" myself how to kiss my husband because my mouth no longer worked right. I've always prided myself on my articulation, which was a nightmare with Bell's Palsy. It took me months to no longer slur my words. A week later I was put on bed rest. After that my husband and I were terrified of what might come next.  My husband took the idea of bed rest literally for me.  He all but strapped me to the couch and used any threat he could think of to keep me there.  As if my ability to stay on the couch would make the rest of my pregnancy suddenly perfect. I remember at that point I stopped praying for myself in the pregnancy.  I prayed only that my daughter would be untouched by everything bad that was happening to me. I felt the prayers wrapped like a bubble of protection around my baby.

My labor was rough, which was to be expected due to all the complications. But it could have been a lot worse. L was born four weeks early thanks to my bed rest buddy preeclampsia. The nurses cleaned her up and NICU took over to check her out.  They proclaimed her perfect and placed her in my arms. I looked down into her beautiful little face and I swear if it had been a movie the angels would have been singing in the background. Everything centered around that wonderful little miracle quietly mewing up at me. I laid like that for awhile, with tears streaming down my face, thinking about everything that I had overcome to get to that point. It made me realize that I would suffer and do anything for my little girl.  Anything. That moment is still crystal clear in my mind as if it had just happened yesterday rather than almost five years ago.  That moment turned me into a Mom.

Two others that come to mind were when I accepted Jesus into my heart and the moment that I realized that I wanted to spend the rest of my life with my husband. What have been your defining moments?  I'd love to hear them!

Friday, March 18, 2011

Pop Quiz Answers

So how do you think you did?  How many of these people have a chronic illness?  The answer is.... all of them do, as some of you guessed! If you click on the names of their chronic illnesses it will take you to a link with more information.



Lupus, Sjogren's Syndrome, Raynaud's, Diabetes, Asthma, and Fibromyalgia

Bipolar Disorder

Chrone's Disease

Sjogren's Syndrome, Psoriatic Arthritis, Hashimoto's Thyroiditis, and Asthma

Sjogren's Syndrome, Asthma, and Undiagnosed Mixed Connective Tissue Disorder

Sjogrens Syndrome, Raynaud's, Osteoarthritis, Dysautonomia, Localized Schleroderma, and Fibromyalgia

Irritable Bowl Syndrome



Sunday, March 13, 2011

Pop Quiz Time

Recently a fellow blogger, in conjunction with a few students at Villanova University, created a photo display of chronic illness at it's worst to create awareness. To read and see more about this project of Jenny's, at UII, look here.

In the past week I went back and re-read her posts, about the project, and it got me thinking about the people in the photos. The purpose of the photos was to show people what it can look like when a person is suffering from a chronic illness. Most of the photos were of things that were fairly visible. That led me to think about the people who suffer from "silent" things.  The things that aren't easily seen. I have written before about the significance of not making snap judgements about a person if you go by the way they look or the way the act. A person in a motorized grocery cart or a perfectly healthy looking person in a handicapped spot can look bad, but it can also mean that they are suffering "silently". I have been on the wrong end of assumptions about my health before.  It's not a fun place to be.

So in my own humble way, in the name of awareness, I bring you this Pop Quiz.

Instructions.... Please list, by their letters, in the comments section which people you think have a chronic illness. In about a week I will post the answers.  I cannot wait to see how this plays itself out. I can't wait to see your reactions and promote some awareness at the same time!












Friday, March 11, 2011


 Have I ever had the privileged of introducing two of my nightly bedfellows.  Now don't start thinking dirty, I know where some of your minds are going right now!  I am talking about insomnia and restlessness.  Like the Goodfellows from the movie these two are nasty unwanted thugs in my life that I just can't get rid of. They are both mean-hearted villains bent on my sleep's destruction. Sometimes, in insomnia's case it's very obvious that it doesn't want me to get any sleep.  Restlessness is much more subtle about things. Often at night I am restless and constantly rolling over to seek a more comfortable position to sleep. I usually am aware that I am doing this. There are some mornings I wake up feeling as if I did a complete gymnastics routine while sleeping. And other mornings I wake up feeling like I slept pretty well because I can't recall being restless.  And yet, from the moment I get up I realize that I was wrong.  The restlessness can be very very sneaky!

This morning I woke feeling as if I must have slept fairly well.  I didn't recall waking up to roll over very much. But, apparently, I was wrong. Very...very wrong! I took one look at myself in the mirror and I had wondered if I had gotten in a fight with someone in my sleep.

This is one of those days when I am actually glad that I wear glasses. They are effectively covering up my black and swollen eyes this morning!

Tuesday, March 8, 2011

You Know You Have an Auto Immune Disease When......

*You are happy when your energy level is at low rather than non-existent.

*You start referring to your energy level in spoon quotients.

*You are considering buying stock in magazines and air freshener. (This one's for the people with Chrone's Disease.)

*Doctors offices are on your speed dial.

*The pharmaceutical industry sends you a "thank you note" and fruit basket ever Christmas.

*You consider taking part in medical trials to be a hobby.

*You're on a first name basis with your rheumatologist.

*You are on a medication to take care of side effects for another medicine.

*You are on a medication to take care of the side effects of the medicine that you are on that takes care of the side effects for the first medicine.

*You could create your own style line based on your auto immune needs.  Such as gloves in the summer for those with Reinards. Or wide, floppy brimmed sun hats for the Lupus crowd.

*Your pharmacist doesn't have to ask for your name when you come to pick up your prescriptions.

Have any to add?

Friday, March 4, 2011

An Appointment with L...

Yesterday I had my post op appoint with my gyno doctor. (Don't worry! I am not going into detail about anything icky!!!) I had to bring my daughter along with me. I didn't have a problem with it since I had thought that we would just be discussing things.  Well I was wrong!  So very very wrong!

My daughter giggled as I began to change into my cute little tied-in-the-back gown. I let L know that she could just stay in the corner and keep her nose buried in her "video game" so she didn't have to see anything if she didn't want to. I was worried about her reaction to what was to follow. She excitedly assured me that she wanted to see everything. Umm.... OK. I climbed up on the wonderful gyno thrown and waited for the doctor to check me out.  The doctor and medical assistant pulled on their blue gloves and froze as they heard, "Wait! Where my gloves? I need gloves too!!".  Needless to say the progress of my appointment stopped for the next few minutes as the medical assistant helped L on with her gloves. I truly thought that my daughter would go back to her video game after she had the gloves put on. But....no. She took up the medical assistants position right behind the doctor's shoulder.  And then...proceeded to bombard myself and the doctor with questions for the next ten minutes. She had the doctor and medical assistant laughing through out the whole check up.

As we walked out to the car L kept up with her busy little chatter.  I began to pull out of our parking spot when I noticed the silence. It was charged with an air of uneasiness and barely bottled curiosity.  I am sure you can guess which came from me and which from my daughter. And so, I began with.... "So..... is there anything that you have questions about?".  Boy did she ever! I will spare you most of the details of the conversation.  The only part I will share is the point when she found out what the real names for our body parts are called.  She thought about it for a moment, giggled with her hand over her mouth, and breathlessly whispered, "I'm not telling Daddy about this.  He's gonna have to find out on his own!" I really tried very VERY hard, but I couldn't help but burst into laughter as I explained that I was pretty sure that Daddy already knew about that because it wasn't a secret.

I am sure I won't be surprising you when I say that that appointment and conversation was the funniest conversation that I have had in quite awhile!

Tuesday, March 1, 2011

Just Curious

I do not know if I have written about it before now, but my Mom also has several auto immune diseases. One of which is Sjogren's Syndrome, which I have. (That's perhaps a guest blog for another time.) It's not unheard of for a Mother-daughter team to both have AI's. Some auto immune diseases are known to be hereditary and others...they can only guess at. Because, basically, not enough is known about them.

Anyway, I was generally curious about my auto immune audience. I wanted to know if there were any multi-generation families with auto immune diseases, reading my blog. So I set up a little poll for you to take part in. It should be interesting to see the answers. I'll share them with everyone once the poll is done (in six days). I hope you take half a second to answer the question. (The poll is to the right of the blog under my blog archive.)