Tuesday night ramblings

Actually it's Wednesday morning since it's 2:23 a.m. but I doubt anyone is going to argue.

It's just been one of those days. Spinal cord shrieking, lungs crying out to be let go. I was able to sleep and escape for a couple hours this afternoon, which was a blessing.

I crocheted the 6 squares that will make up the 3rd panel of my daughter's blanket. It's coming along nicely and is a good way to try to distract myself from the pain.

I took a poll/survey today with some friends regarding our age. Sometimes the seemingly smallest of things can play with my heart. So I'm 30. My birthday was earlier this year. I'd hoped to have a big day, maybe over the weekend or something. Nothing really happened in that regard but my home group took me and the kids to Applebee's, which was a nice treat.

The poll today though, it's hard to explain. I guess it relates back to the birthday because there's a feeling inside, something I am thinking is jealousy. My friends put their answers, scattered across the decades, and I see them and stare in silence and just wish to reach 31. DH knows though it is not at all costs. Having been on life support before, it is not something I am willing to go through again, especially with this combination of incurable disorders and tumor impacting my brain stem like this.

I should hear from the Dallas surgeon in another day or two, provided the hospital where the cardiothoracic surgeon is located actually faxed the notes. He told his nurse he will call me himself, so I'm very curious. I added a couple of links to the thoracic outlet section on the right--one on quality of life, and other an article from the Mayo Clinic.

Guess that's enough of me rambling in the middle of the night. Hopefully I'll get some naps in later to make up for right now. I have no plans for today, not outside the house anyway. I'm going to check up on the faxing issue and do lots of crocheting.

Universal health care. Dying for an MRI.

http://tinyurl.com/2epo4y

Girl dies of brain tumor after doctors tell her 'headaches are just stress'

This 22 year old in the UK died after waiting 13 weeks for an MRI. She didn't make it to the test, never found out about the brain tumor that would take her life.

I am not saying I am for universal health care. If you know anything about my situation, then you know things in the United States aren't so hot either. There has got to be a better way, something better than both of these. I'm not pretending I have the brains or skill to pull this off. There are just so many things wrong on so many levels with both systems, and I fear it will get far worse before it gets better.

In any case, it is inexcusable.

Brainaversary, daughter's sleep study

3 years ago today was the first of the brain surgeries. The beginning of...the end?

No news yet on what to do with this ginormous growth in my brain. Each day that comes and goes is an excruciating wait.

This afternoon I finally got the results on my 5 year old's sleep study that was done August 1st. Better late than never (that's what we get for living where there are only two pediatric pulmonologists). The doctor said she has serious apnea and severe disturbances and needs a second study to be fit properly for the CPAP and get her oxygen level under control. I can hardly wait to see if getting more than 3-4 hours of sleep for the first time in her life will bring any positive change in her behaviors. We were to have a meeting with the school psych, teacher, and principal this morning regarding her suspension last week and her IEP but the psych's grandmother had emergency surgery last night so we rescheduled for next Wednesday.