Why the Hell do Mosquito's have to suck blood? Can't they suck out fat instead?

Shunt'o gram

We made it to Charlotte in record time 3 and a half hours. My headache had give me a fit all the way down here. I am not having this test none too soon. I have to check in at 7:30am it is 7:00am now so we are drinking some coffee and relaxing a bit. Test will start at 8:00am.

I tried to walk from the parking lot and I'm so disappointed. I got so fatigued so fast when 6 weeks ago I was walking and swimming.

Right time right day!!!!

Charlotte Here I come!!! I had a had headache day yesterday. I am so ready for this test. I have a bag in case he want to keep me. I know no luck in that.But I'm on my way there.

Right time wrone day

At 2:40am I woke up no alarm clock. But wait... wrong day. So now I am wide awake Ginger(my cat) is pleased she has been pacing through the house on patrol like a bull dog and now thinks I'm awake just to be her needing post. I could go back to sleep with her doing this it every little bit she would not touch her nose to my arm and send chills through me. I know she is doing it to keep me awake.

So I have a bag in the car what would my luck be that I get to just say and have surgery tomorrow. Do you know how ready I am.

I was getting out with friends having a social life. I had even dated for the first time in a two years. I was not scared to make plans a week in advance. I was even neglecting my blog because I was so busy hydro was not effecting me. Goes to show don't take anything for granted be thankful for who and what you got.

I am truly thankfully for my friends and family that have stuck with me through this. It means the world to me.

I have got closer than ever to my niece with all this time we have had. She now considers me her second mom. And she reads my blog. How cool!!!

I'm Board

I have 2 more dayd to go until I have my shunt'o gram. I have been in the hospital with headaches and to the ER 3 times. I have Googled everything from my blackberry possible. Did you know frogs don't sneeze?

In all this craziness my internet went out for like 10 days. I'm still waiting here. Been waiting since March 14th.

pre surgery

I went yesterday and got my usual pre surgery hair cut. True it is way too short but it makakes it so much easier to clean the badadine(sp?) out of my hair.

I'm having my shunt'o gram Tuesday. Its just 4 days away now. I went ahead and got the hair shaved off just in case I can have surgery with in the next few days after the test. I'm crossing my fingers.

What could have gone wrong?

My mom was talking to a nurse during swimming class about my last dentist appointment. I thought I would be ok since I had this new shunt put in. I let the dentist lay me back all the way in the chair. I usually try to just lay flat. I had a bad headache for days after this visit. Plus I had 2 visits in one week. I should have never laid down more than just flat. I think that is why I am suffering now. I wonder if anyone else has these problems?

Bruised Headache

Real nice... I have not been doing extremely bad with my headaches. But now I'm having head rushes of pain when I move and the bruised headache. I brought it on myself. I was down in the dumps last night. I downloaded some Godsmack onto my Blackberry and listening to it sang along and danced like no one was watching for a song or to.

Have I told you activity makes my headache worse? Well now my headache it worse.

Normal Pressure Hydrocephalus

5 point neuro check

Why they do this to us...

Topamax is back up to 150

Three days ago I decided that the topamax was not helping or hurting my headache so I went back up to 150mg. I went down to 125mg for a month to see if it made a difference and it has made no change so I'm going back to my regular dose I was at.

Increased ICP

Systems of Hydrocephalus

Driving me crazy

I'm grounded

Here is a crazy one for you activity makes my headache worse. So No swimming and no treadmill. I'm just crossing my fingers I don't gain back the weight I lost.

Shunt O Gram

This morning I was laying in bed googling shuntgram with not a lot of luck so I googled Shunt o gram. Poof!! I have been calling it the wrong thing.

This is a test

If It was a test yesterday I failed. All I have done since I have got out of the hospital is lay around. I try to stay where I wont bother the headache. I finally got board so my mom took me out for lunch. Wow! what a ride. I thought my head was going to explode. Laying around the house I get to second guessing that maybe my shunt is fixing itself because the headaches are not as bad. Well, guess no more!!! Something is bad wrong and I thought yesterday the entire shunt was going to pop out of my head. Just riding in the car made my headache skyrocket.

Today I have what I like to call a hangover headache. Where I still have the headache about as bad as yesterday but I also have the bruised feeling from the really bad headache I had yesterday.

When I had my programmable shunt after each adjustment I would have the bruised headache from the pressure change for up to a week. No pain medicine can help this pain either.

Making plans

So I have been blogging from my blackberry now I'm blogging on my mom's laptop. It is much faster. But does strange i like the period placing itself and spell check fixing my errors. I keep messing up having to try to figure out what I have hit because I keep wanting to navigate away from this page. I'm thinking!!!NO!!! I'm trying to do something here...

I am in a mood today. Thankfully I had my niece to boost my spirits and even though she may not know it my dear hydro sis "Sara"

Sara, told me how much she enjoyed my blog and helped my feelings this morning. Before she commented I was thinking 17 days until I have my shuntogram and this means 3 weeks or more until surgery. What if I'm stuck in this bed another 8 years? I will go nuts!!! Sara even mentioned coming for a day to see me. WOW!!! that has mad my day... To just think about getting to meet another hydro peep excites me.

I hope to get my Internet back Monday. It is being upgraded. I want to put some information up about the shunt gram or I think it may be shuntogram. anyway it is the test I'm waiting to have.

18 days to go

It is probably not the most productive thing I could do is count down how many days I have until my shunt gram. But I'm about nuts waiting. I don't feel like doing anything. My internet is down. I would like to research a bit more about adding the Anti-syphon device I can get on my support boards on my blackberry but wow! Not good for the headache trying to read the post. I don't even post on there because it would be too difficult to tell if someone responded to my post.

anti- syphen device

I just finished talking to a friend of mine ashley and got some really good news. She ask me if I had an anti syphen device with my shunt. She had one placed in February to help with her shunt over draining which is what mine is doing. I am so excited to get this news from her. Dr. M had suggested I may need the ASD and he also said he had placed an ASD but of course did not say who. But I am feeling like this is what I need.

I was talking to another friend this morning that I wanted to get back to living it is like I had just got a taste of what life use to be.

Its hard to believe my friends, my work, my social life had been on hold for 7 nearly 8 years because of illness. I know too much about this condition to let it take over again. Plus this is the reason for the blog to show different places and resources to help.

Shunt Gram

I finally got some good news. Lisa called and I have the shunt gram scheduled in 2 weeks. So hopefully we will finally find out what is going on with my shunt and what I need.

I am still having the nagging headache but I am able to sleep so this is good. So I just have to wait. My fatigue is still the same I don't know why I feel so exaustested but I do.

Evertything is on hold

It is like once again my life is on hold. I'm kicking myself now I should have had the test done while I was in the hospital because all I have done ever since I returned home is suffered from fatigue and headache. Then every few days the fetal position headache
Now I can't get the test I need I'm depressed and hurting. All I'm doing is the same thing I did for many years with these complications lay in bed and wait.

But I had a taste of my life back and now its gone again.

Life goes on

It is sad that when we have illness or other issues that create a major life effect in our life the world keeps going. As much as I really would like to ask for a break from the pain I know I'm not suppose to. As long as I am hurting with this and telling my story hopefully I am taking pain from a child. Or maybe one of the test done on me will help find another step toward something to prevent this condition.

But life goes on. My daddy's dear friend is loosing his battle with cancer. Daddy went to see him yesterday and he was sleeping. He was going to leave his name with the nurse but the nurse told him that he would want to see my daddy. (Crying) He did know daddy but could barely lift his hand. He mumbled my daddy's name.


I'm sorry I have just been giving the minutes of my headache lately. I usuallu note my headache in a notebook but I thought this would be a good way to log my headache plus share things and emotions with my blog followers.

I'm thinking I need an anti-syphen device to help regulate the drainage. As soon as I feel like sitting at the computer I will get some information on the ASD. If you look to the left under shunt tupes should be a link for some information.

n

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isotope shoutage

Lisa called Dr. M's assistant called and explained why they had been so long returning my call about scheduling my shunt gram. There is a shortage of isotope. As soon as the indium 111 comes in lisa has a note to let me know and get me scheduled.

Dr. M feels for sure I am for sure over draining. From the CT scans he assures me there is no danger. My vents are extreme small but I should be safe until I can get the test and find out what needs to be done.

Hydro is a headache

I got a break yesterday. I kept pain medicine in my system but I did not have the crazy head rushes. So I get up today of course I have plans with friends I'm laying in bed drinking tea texting Raven as usual. I get up to go for my second glass of tea and the pain and dizziness hits me like I had been hit by a mack truck. Does this headache not know my friends are counting on me all this week? Just like my hydro peeps look for my blog.

I still have not been able to find any good info of the shunt gram to post. I have been spending most of my time laying in bed plus my Internet has been acting up. Thank goodness for my black berry. I love blogging from it.

Pepper is going today to see his regular doctor for a recheck after his hospital stay. But he is doing fine now.