Oh well, this is my life.

Not sure if it was the talk of Mike Maas writing songs about each of us (and to save all the effort I am the drama queen or medical mystery), or me just feeling overly poetic. But this morning I woke up with the first two lines forms and by them time I have word started I was almost done. To those that don't understand how I handle Sjogrens and its side ailments, well this is it...

I’m tired and I’m hurting, but I look okay,
I’m a Mom and I work, but it won’t go away
This invisible illness causing me strife
Oh well, this is my life.

I can’t run from it, can barely walk
Working with doctors and tests that blow
Tell me with speech and fancy talk
Get used to this because they don’t know.

I’m tired and I’m hurting, but I look okay,
I’m a Mom and I work, but it won’t go away
This invisible illness causing me strife
Oh well, this is my life.

The Letterman

So I was lucky enough to spend the evening last night in the company of a good friend. Jeri invited me to dinner and a concert. We saw The Letterman and man it was fun. We got there as the light went down and found a seat. We quickly found a new seat in the back as we decided that we would be giggling though the whole performance! And after... you guessed it. We got our programs autographed! It was fun, the music was wonderful, I really should have been around in the 1960s.

The Newest Nell - Miriam Margaret Nell

Okay so this isn't about me... and I know the world doesn't revolve around me... well not all the time any way.

I am a new auntie!! She made her grand entrance yesterday at 1:52pm. She is 7lbs 14oz. Both her and mom are doing well. Here is the message and pictures that Philip sent:

She was born today at 1:52pm.. weighing in at 7lbs 14oz. Quite a bit smaller than Sam and Rachel, and less trauma as well... Julie did quite well and was very comfortable except for a few minutes before the epidural took effect and during the actual pushing. She has long fingers and dark hair as the pictures will attest...

When Normal Hurts

So, after lots of tests to figure out what is wrong with my leg. All the test say the same thing... results ... drum roll please... NORMAL. Now, one must ask why does my leg hurt if all the test results are normal? I am normal - no Divas can answer that ;-)

Where do I go now? Crazy? If I am not already there... Dr. S has prescribed me some meds to try that might help. We should know in the next 2-4 weeks I guess. It all comes back too, how can I look so good and feel so bad? Hee hee.

On a positive note JT is taking an interest in blogging (hmm is that a word)... so here is a picture of him just after he finished his second entry last night.

Happier Note

Okay so yesterday's blog was a bit dark lets try this -- I found this and it tells you what year you belong in... be sure to email me or leave a comment to let me know what year you are!!

You Belong in 1963

You are a free spirit with a huge heart. Love, peace, and happiness rule - oh, and drugs too.

What Year Do You Belong In?

But you don't look sick...

What does sick look like? I have had a few people tell me lately "You look like you are doing better or great." First I have to think - What did I look like before? Then I start thinking if only they knew it takes me 5-10 minutes in the morning just to stand. That means fighting back pain into a sitting position, then aching hips and knees into a standing position. Do they know that with every step I have a shooting pain in my leg or my hand hurt until 11 or noon every day?

I have an invisible illness that is incredibly painful, tiring , and trying. I found a website that gave a perfect analogy of it... The Spoon Theory insert "Sjogrens" for "Lupus" then think before saying to someone "but you don't look sick." Because I know the next time I hear it I may just snap and say "But you look so smart."

May Day

Spring has finally come, and not a moment too soon. I was told I didn't have enough pictures on my site (even though you can go to my photo blog to see picts). So here is some picts for those who do not want to click to much today.

Here is 6 weeks ago vs. today... both picts taken at about 7am.

Now the real reason I get yelled at is that there are no kid
picts so here you go...
JT is such a big kid

And Hannah is well... Hannah.

Then of course there is me... and well I am doing okay. Still no answers on my leg thing. My Dr has prescribed me some new meds and we will go from there. I am trying to go day by day, moment by moment. Here is a pict of me that JT took from the back seat of the van.