Friday, August 29, 2008

Another Bad Day

Horrible migraine and fatigue today. Where did my migraine medication go? It only works some of the time, but it would sure be worth a try today.

So tired. Can't get up. I've been in bed all day. I'm really worried about working again. This is never gonna work.

Tuesday, August 26, 2008

I did indeed fall asleep on Saturday. It was a bad day all around.

Sunday, the "in-laws" came over and I cleaned and cooked. Everything went well, with the exception of a bout of serious narcolepsy after dinner. I was so gone. I couldn't even say goodbye...That's certainly outside of my range of normal.

Yesterday, I did everything I needed to.

Today was a day off, but alone in the apartment. I tried to make sweet and sour chicken, which would have been good, except I don't have a lid for my skillet, so it splattered everywhere. And, I burned the white rice.

Thank God I didn't mess up the food on Sunday. Dinner was edible tonight, but not great.

I guess I'll try to take Buttons for another walk so the poor dog doesn't bore to death.

Saturday, August 23, 2008

another day

Another bad day.

So sick. So tired. May need a nap. This would be another day I'd have to miss work. It's getting very discouraging. I'm having brain fog. It took me 5 minutes to come up with the word, "discouraging". I'm really out of it. I'll be unconscious soon. I can feel it coming on. Goodbye for now, world.

Friday, August 22, 2008

Fun updates

Took a walk with Buttons tonight around our little pond.

They're putting up public grills for barbecuing around our complex. Buttons was scared to death of this new addition, and barked at it ferociously. We dragged her up to the grill to sniff it. I lifted her up for a more thorough inspection. And still, as soon as we put her down, she ran away from it.

Plus, there was an enormous BEAVER in our pond. For real. This is largest rodent found in North America. It was so weird, and a little scary, since they are quite vicious. But what a sight! Gus estimates it at 55 lbs.

I'm gonna go make some cookies tonight. It's nice to have a day with good energy. I still wasn't able to leave the house until 3:00, and haven't been very active...but better energy than most days.

Chiari Walk Coming Up!

The first ever Conquer Chiari Walk Across America is being held on September 20, 2008. I will be participating in this walk. It will help to raise money for research, education, and awareness of chiari malformation and related disorders.

All information is available at:

I am walking at the Illinois site, in Palatine, IL. Please consider making on online donation to help me walk with a purpose! Click on "Online Sponsor Donation".

Thank you so much for your help!

Still trying

I'm setting up my piano lesson schedule for the fall. My fear is that I will not be able to follow-through...driving back and forth an hour each way...getting myself out of the house by 1:00 every day. I just don't know how I'll do it. But there really is no option other than to give it a good try...even though the effort it takes is just too much some days.

It's just so hard. The fatigue is so strong some days. The first half of the day is especially hard (9:00am to 3:00pm). I'm also having full-body joint and muscle pain most of the time. I could easily be diagnosed with chronic fatigue or fibromyalgia...but I don't need a new diagnosis. I need a new treatment!

I don't know what kind of results to expect from this surgery. I'm almost done with physical therapy (I won't have time for it once lessons start in September, anyway.). I can continue to rebuild my core strength. But it's mostly just a waiting game. But I don't know what I'm waiting for. Maybe some of the body pain will go away. I don't expect the fatigue or the POTS symptoms to get any better. And without that, it doesn't matter if my daily headache doesn't get any better. Headache or no headache, you can't do anything without the oxygen in your brain.

I keep thinking back what Dr. Milhorat said during traction. He noticed that as soon as they lifted my head to the "sweet spot", the color returned to my face. My headache went away at this point, and my brain fog went away. I was getting enough oxygen in my brain!!! I won't feel better until that is my normal state...a fully-oxygenated brain. At least, that would make sense to me. I know that some people are opposed to the idea of revising the fusion, but how can that evidence be refuted? I was there, I experienced it. I experienced my head being lifted, and that directly reducing my POTS symptoms. Essentially, they could be eliminated...along with my headache and fatigue. If those problems were solved, I could live a normal life. What more could I ask for?

Wednesday, August 20, 2008

Sick and sad

Some days, I just want to give up.
It all seems like too much.
How to go on.
The body is so weak, so tired, so sick.
I can't be the person I want to be,
the person I'm meant to be.
I hurt.
No one can do anything.
Nothing can help.
I fear.
I may fail.
I may not be able to live this life.
I live the bare minimum.
But even that may be too much.
For this body,
This weak and tired body.
Just to start a day is a battle.
How to continue.
How to push forward.
How, when I am so alone.
When no one can understand.
When no one has answers.
When I am bound to let everyone down.
When I may not make it through this.
When the most I have to offer may never be enough.

How to not give up?

Saturday, August 16, 2008

Hoping for a Better Day

Well, things with Buttons have calmed down. She's going through a real transformation in personality. She's getting used to car rides and her new environment. She's getting more exercise. She's barking a lot less. So, I think she'll fit in just fine in our little household.

We have friends coming over today, so I have to try to be least get dressed and make some food. My energy has been so low lately. It makes me worry about starting work in a few weeks. This morning, I was too nauseated to finish my bowl of cereal, had vertigo spells, tachycardia, and severe lethargy. So that's a rough start to the day...but nothing too unusual.

Maybe it will get better as the day goes on. Especially if someone would turn that ugly music off (Gus...)!

Thursday, August 14, 2008

Settling in

Things had finally calmed down a bit around here. Then, yesterday, we welcomed Buttons into our home. I don't think she's very happy about it. Buttons is 8 years old and has lived with our family that whole time, in the same house. She's also never been an "only" dog. So being in a new place is very stressful for her. We had a rough first night. We'll hope things get easier for her.

So far, today has been a real sick day for me. As Gus pointed out, if today were a work day, I'd be missing work. I'm still in my pajamas, and haven't managed to take my shower yet. Hopefully, the day will get better. I've been nauseated, weak, unsteady on my feet, and very tired. I woke up and 10, then took a nap from 11 to 1. That's very unusual for me. Hopefully, resting for the first half of the day will make the second half a bit easier. So, I will go make my next attempt at taking a shower.

Tuesday, August 5, 2008


Well, I've spent the past four days moving, cleaning, and organizing, and there is still much to be done! But mostly, the move is complete. It was a horrible strain on my body. My back and neck are so sore. My feet ache all the time...I'm not used to standing this much. But all the major work is done, so today, I can do some easier jobs and relax a bit.

It's hard living this far from my parents, but I'm happy with the place we found. And I'm happy it will work for both of us.

So, this makes recovering a little harder. I'm sure a few days of rest will help. Overall, I've been surprised by my stamina during this time. So without getting too hopeful...maybe things are getting a little easier.