Chiari 1: Imagining A Patient's View

So I Say

Another headache
The third today
We all have them
So they say

I'm getting dizzy
My vision blurred
you're getting older
Don't be absurd

I'm staying home
Too tired to go
Go see your doctor
She should know

Too many symptoms
You must be stressed
Take medication
And get some rest

I cannot think well
Can't find the words
My memory slipping
My speech gets slurred

We'll get a scan
Since you insist
If we find nothing
Please don't persist

Don't make me laugh
Don't make me cry
It hurts to strain
I don't know why

Your scan is fine
By report today
Incidental Chiari
So they say

Incidental
What do you mean
By a doctor
I have not seen

It is anxiety
That makes you so
The world is stressful
I think you know

I pulled away
Gave up, or such
Until the pressure
Became to much

I waded through
The internet
Fearful of losing
What I have left

It took some time
To come to know
My brain is hanging
Down too low

With every beat
The fluid flows
Deep in the brain
To the opening below

The rush of fluid
Seeking release
Finds cerebellum
Which makes it cease

The pressure spikes
My head explodes
It makes such sense
Now that I know

Working together
We'll find a way
To make it better
So I say

by John Oro', MD


I found this poem about the first disorder that I have--Chiari. Then layer that with the pseudotumor cerebri or also known as intracranial hypertension and no wonder I have headaches all the time! :)

Wednesday

Wow, time is disappearing! I am doing pretty well over all. What a blessing that is! There is always the ups and downs but in general things have been fairly level. That being said, I can feel the storm coming now!

I keep thinking about how blessed I am. It is pretty easy to get down about things that I can't do and places I can't go. But, I have been able to do so much more than I did last year, or even more than the year before that! How difficult it is to keep perspective in life.

We had a very nice Christmas. Christmas Eve was spent just with our family, so it was quiet and very nice. Christmas day was spent with my family, including my sisters and their families and my parents. What a blessing to be able to be with all of them! It was a little overwhelming sometimes, so I just left the room and sat quietly in an empty room for portions of the day, but that made it very doable.

The Lord has answered our prayers in a way that He knows is best for us and in a way that makes things easier for me to live day by day. His plan is always best even when we can't see how that could be, and I am very thankful that His plan has given me rest from the intensity of pain that I was experiencing daily before.

Remembering

My family.




My sisters




A week after getting out of the hospital the last time. This hospitalization was the longest at 5 weeks.




A week after the hospital stay--enjoy some time with the kids.

The long hospital stay. My family had a baby shower for little sister, Tami, in the hospital. The put some makeup on me and fixed me up a bit. It was wonderful!

Holding the little one. I remember that I was too weak to actually hold him, so my sister propped him up next to me so that I could enjoy little Kayden.

Following the first (and second) shunt surgery, my kids cut the remaining hair from my head.

Before the shunt surgeries when my head was really hurting.

Right after the first shunt surgery. The kids cut my hair, as pictured above, a few days later.

Following shunt surgery in March

It feels like the work week should be done. I am exhausted! My fault. A busy day Monday with work and our office Christmas party in the evening, and then work and Christmas shopping with my mom and an office appointment in the evening on Tuesday put me under. I am thankful that I got through it all, even though the shopping trip was entirely done from the wheelchair. But I paid for it pretty well on Wednesday and still have that "headache hangover" feel today. Not terrible, but not something I would choose. But I am thankful that it isn't worse today or that I wasn't even more miserable yesterday. Can I call that progress? A little, perhaps.

I love the Christmas season, but I am so very tired with all the extra's that it will be good for me to settle back into a little more quiet and steady life in January.

As I write this, I realize that my two year anniversary for the first shunt surgery was just yesterday. And the first shunt surgery, that I thought would be the final answer, was just a first of many, with the second surgery only a day later--two years ago today! So perhaps seeing some pictures from then and now would be a good reminder for me to be thankful that God has richly provided and that although I am not great, I am certainly better than I was.

I am obviously computer challenged. I decided to put on some pictures after writing. However, I couldn't seem to get them below this writing and they went on in the wrong order. Oh, well. The point is the same. From the first pictures (that was going to be the last) to the last I can see that I am looking much healthier. I really do have much to be thankful for this Christmas season!

Saturday

We have just experienced a huge snowstorm/blizzard. I have had a few calling me to see how I am doing, and amazingly I am doing very well! I could feel the storm coming, but it didn't make me miserable like those changes often do. Since this was such a big storm, it could have really hit me hard. Do I dare hope that with fall officially past that perhaps the weather systems won't affect me as badly? Maybe I am past the worst. But, I think for now I will just be thankful for the good day and continue just taking it a day at a time.

The Lord has been so merciful to me. So many people have prayed for me, and what an answer to prayer that I am doing better than I have for so long. What a blessing! The Lord has answered our prayers all along, although not always answering the way that we would have liked. But it is a blessing to know that the Lord has a plan for me and my family that is good, and that even if it isn't always understandable to us and not always what we would like, it is still good. God is so good!

This is so incredible that I had to share!

Christmas is coming

Where is the time going? Christmas will be here soon and I have barely started Christmas shopping. It is a little more challenging getting those things done when I am really dependent on having someone "take" me. I've done some internet shopping. But. . . Kyle may take me around a little tomorrow evening because I have a doctor's appointment in SF late in the afternoon. The poor man really isn't a shopper, so that isn't his favorite thing to do.

The weather has been more steady. I've had a few good days and have gotten a few more things done. This evening seems to not be as good but hopefully I am just more tired and that is affecting me. Physical therapy seems to help with ultrasound and deep massage on my right shoulder and neck. But that isn't really a long term solution.

Big week

Well, I have nearly made it through a very busy week. I am feeling it, though!

Kylie had a music concert Tuesday night, I had a meeting in Storm Lake all day Wednesday, Thursday night piano recital and Saturday is a church function in the morning and the kids' NISYO concert in the afternoon. If I can get through this week, I will be so happy! I really enjoy the activities but it is quite exhausting.

I squeezed in physical therapy this afternoon. My muscles were pretty tight and sore after all the activity. If I could just figure out the headache triggers so that I could do things to avoid the bigger headaches, it would be so nice! But no matter how I analyze it I can't always figure out what causes them. I know that the barometric pressure is a trigger, but I can't do anything about that one. Sometimes being too busy will cause it but sometimes it won't. I am trying very hard to keep my neck and shoulder muscles stretched and relaxed because when it becomes tight I know that it affects my head. But as for the rest, I guess I just continue on!