Tuesday, October 31, 2006

The Latest (UPDATE below)

I had an appointment with my neurosurgeon today. Finally. I've had two appointments that I've had to cancel because I was too ill to go. I knew I couldn't cancel this one.

My Pseudotumor Cerebri and Arnold Chiari symptoms are getting way too bad. Not only has the pain and swelling increased, but I've also been suffering from severe... sometimes paralyzing back pain.

The pressure behind my eyes (and entire face) is worse and my vision is getting really bad. Things used to be blurry and fuzzy, but now there's a "film" over my eyes that prevents me from seeing.

I've been having breathing problems and wake up several times a night not able to breathe. Finally I realized it was positional. Apparently I'm arching my back/neck due to the pain and my head goes all the way back touching my back which causes my trachea to close... which results in my inability to breathe. Duh. (But the one thing I am actually pleased about... I CAN BEND MY NECK BACK ALL THE WAY BACK! I haven't been able to do that for years. Of course, I can't do that while I'm awake, buy Yay! It's possible ;)

I've had problems walking. My dear friend, Melinda, gave me a rolling walker (the kind with the seat). I'll say Jacob gets more use out of it than I do. Could be because he's using it when I need it!

I'm still swollen all over. My nose is just as big as it was when I was pregnant. (Speaking of which... Jacob's turning 11 in just a few days!!!!) I'm taking a very low dose of Bumex. The dose really needs to be adjusted, but what do I know? I'm no doctor. I've only lived with this disease for almost 18 years... why would I know my body and it's symptoms better than a doctor? Yes! I'm bitter today.

I'm going to have to have another VP shunt operation. I'm not sure if he's going to replace it or revise it. Either way it's brain surgery. Either way it's going to last for hours. Either way I'm going to wake up from the operation vomiting severely for the next 18 plus hours. Oh, I'm not looking forward to that. Vomiting with an incision in my head, neck and stomach... not fun.

But neither is going blind from the increased intracranial pressure. Once the vision goes from blurry and fuzzy and "filmy" to black... there's no going back. It's irreversible. And I can't be blind. Not on top of all I'm going through right now. I can't bear a lot of things going on in my life right now, but I know I couldn't go on without seeing my precious baby Jacob's face everyday. He's my light. And I thank God for giving him to me.

My surgery is scheduled for next Thursday, November 9. Arrival time is 7:30 a.m. and surgery time is 9:30 a.m. Now I'm off to ask a friend to shave my head. Darn it! I just got it to grow back. It's finally past my shoulders for the first time in years. Oh well. I did need a cut. At least I found out BEFORE I paid the big bucks for that ;)

Thanks for your support and prayers. You all have been wonderful friends!

Love and hugs...

Friday, October 27, 2006

Friday Funny... Pets Dressed Halloween Style

Some of these are just so wrong.

Tuesday, October 17, 2006

To the Point...

Jacob's first EKG was normal. (Praise God!) He's to have at least one more... kind of like a stress test. He has a complete physical in a few weeks. Keep him in your prayers!

I'm not well. The swelling's back and this time not responding to the diuretics... not that it ever really has.

Had a terrible "episode" Friday evening with my back. Excruciating pain. Thank God Mom just stopped by to bring dinner. She and Daddy begged to take me to the ER, but I wouldn't let them. It's no use to go to our local hospital anyway... not only do I not trust them (and have plenty of experience with them to feel that way), but I've fired most of the neurologists and neurosurgeons in town.

I hurt all over. Every muscle in my body is aching. Even my armpits hurt. Although that could be because of the smell as I haven't been able to shower for days ;)

An MRI I had a week and a half ago was "Normal with (my) severe neck trauma". Does that make no sense at all or am I just crazy? Don't answer that!

Will try to keep you informed. Sorry for scaring so many of you. Thanks for your support as always!!!!!