First of all I'm thankful I have hydrocephalus....Yes, that is what I said. If I did not I it might mean one more child might have to have this crazy condition. It might mean someone that did not have parents that fought for their life like mine fought for mine.
I'm thankful that God has give me my purpose in life. If this Blog helps one person find information or help I feel like I've served part of my purpose in life.
I'm thankful for every surgery I've had there has been numerous people come in and out of my life and I've grown strong bonds with the people that stuck with me through them all. Even the ones that could only stay in contact by text. I felt your love.
I'm thankful to know I've got an unconditional best friend. That is something I always gave to my friends was unconditional friendship. But never got it in return. Its such a blessing to have a best friend that makes you feel beautiful even though you have gained weight.
I love Michelle for wanting to shave down and be bald with me but its like a punishment for me right now. Ever though I do like the short and sassy looks. Not as short as michelle's but I like mine short.
I'm wanting to get my energy back so I can workout and swim. I still feel horribly tired. I'm ready for it to go away! But if I felt better that might mean someone else would feel bad too.
I don't ask why me. I ask why not me.
Tuesday, August 31, 2010
Today was my after surgery appointment
But I canceled. As I've told you things did not go so smoothly in the hospital. I came home a day too soon. I've been pushing this recovery a bit now I'm having to deal with the side effect that anesthesia has left me with. I feel sleepy all the time. Just kinda sluggish.
I'm also feeling down in the dumps. The other night I was trying to go to sleep and started remembering this guy I tried to help. He had a real bad accident. And had a bad problem with asking "why me" I tried my best to help him to have an attitude like me. I much rather this be me than someone else.
I don't know why I thought about this person I ended up being so disappointed in him I had thought so much of him.
I literary feel sick remembering arguments that happened between us. I had not thought of this guy. I blocked him out of my life because he was not a health energy and I went to the ER already once because of him and arguing. I can't deal with the stress.
I hope stress does not effect me like this after this last surgery. its not normal for stress to nearly send us into shunt failure.
I figure with my pressure being so low anyway it did not take much to tip the scale.
I'm also feeling down in the dumps. The other night I was trying to go to sleep and started remembering this guy I tried to help. He had a real bad accident. And had a bad problem with asking "why me" I tried my best to help him to have an attitude like me. I much rather this be me than someone else.
I don't know why I thought about this person I ended up being so disappointed in him I had thought so much of him.
I literary feel sick remembering arguments that happened between us. I had not thought of this guy. I blocked him out of my life because he was not a health energy and I went to the ER already once because of him and arguing. I can't deal with the stress.
I hope stress does not effect me like this after this last surgery. its not normal for stress to nearly send us into shunt failure.
I figure with my pressure being so low anyway it did not take much to tip the scale.
To Buzz or not to Buzz
So Michelle my best friend has been wanting to buzz her hair off to match mine. I told her not to and she blogs about it and it's so sweet it makes me cry that I have a friend special enough to want to do this for me.
We keep going back and forth to buzz or not to buzz? I have no hair as is... It would mostly be her getting hers buzzed. I'm not wearing my bald head with pride so I keep telling Michelle not to do it cause I'm hating being bald.
I got a great pep talk from a friend "Jeff" today he told me to wear it and show it off I was an assume person. I'm going to try to not hide my head so much but I still hate for my friend to go bald for me...
We keep going back and forth to buzz or not to buzz? I have no hair as is... It would mostly be her getting hers buzzed. I'm not wearing my bald head with pride so I keep telling Michelle not to do it cause I'm hating being bald.
I got a great pep talk from a friend "Jeff" today he told me to wear it and show it off I was an assume person. I'm going to try to not hide my head so much but I still hate for my friend to go bald for me...
Sunday, August 29, 2010
Post-op progress
8 days ago I had surgery and I'm still having surgery pain to an extent. Its more of tightness and tender to the touch. Today the headache is much less and the pressure feeling and feeling of swelling has gone down a good bit.
One very big difference since surgery is my fatigue. I know I'm still tired to an extent but I'm not constantly exhausted to the point a bath is a chore.
So this tells me the anti siphon is keeping my CSF to a normal level. When it is low my fatigue is horrible. The Dr. Can't explain why this happens but this is a fact. Low pressure causes headaches and major fatigue.
It will take 6 to 8 weeks to get the anesthesia completly out of my system that drags me down to a certain extent also.
One very big difference since surgery is my fatigue. I know I'm still tired to an extent but I'm not constantly exhausted to the point a bath is a chore.
So this tells me the anti siphon is keeping my CSF to a normal level. When it is low my fatigue is horrible. The Dr. Can't explain why this happens but this is a fact. Low pressure causes headaches and major fatigue.
It will take 6 to 8 weeks to get the anesthesia completly out of my system that drags me down to a certain extent also.
Friday, August 27, 2010
Went for a short trip
In just a few days I have my re check in Charlotte. So to break the boredom and get rid of this mop on my head my mom took me out for a short trip.
I got the remaining mop shaved off my head I left bands and some around the hat line to look like I still had hair (ain't I clever). True it looks stupid without a hat but I don't plan on being seen without a hat. In probably 3 months I can spike it and do a rocker chick kind of look.
Riding in the car did not bother me like it did coming home Monday. But when I got out of the car at Wendy's and to eat I got dizzy and had a head rush. I don't know what made me do it. I have not been having them getting up in the house.
Maybe it had to do with the anti siphon working more with me moving around in the car. And then trying to adjust quickly getting out of the car. I'm still reading and trying to understand how the anti siphon works I hope to add info here soon.
I got the remaining mop shaved off my head I left bands and some around the hat line to look like I still had hair (ain't I clever). True it looks stupid without a hat but I don't plan on being seen without a hat. In probably 3 months I can spike it and do a rocker chick kind of look.
Riding in the car did not bother me like it did coming home Monday. But when I got out of the car at Wendy's and to eat I got dizzy and had a head rush. I don't know what made me do it. I have not been having them getting up in the house.
Maybe it had to do with the anti siphon working more with me moving around in the car. And then trying to adjust quickly getting out of the car. I'm still reading and trying to understand how the anti siphon works I hope to add info here soon.
Only a true friend
I'm left with a mop of hair on my head that I have no other choice but to shave it and let it all grow back even. Michelle my best friend offered to have hers shaved too in support for me and the cause. Only a true friend would offer her lovely locks for her friends sake.
Wednesday, August 25, 2010
What a night
I guess I should have know things were going too smooth yesterday. I had pain but it was not too bad. I slept a lot. Then about 10:00pm last night it was like someone hit the on switch. My headache started building up it felt like my head would explode. So of course I assumed the fetal position as usual.
I made an attempt to go on my on to the kitchen which caused major head rush pain and dizziness.
This morning I woke up with a few sharp pains but the headache seems to have calmed down.
I made an attempt to go on my on to the kitchen which caused major head rush pain and dizziness.
This morning I woke up with a few sharp pains but the headache seems to have calmed down.
Tuesday, August 24, 2010
part of the reason I'm having such a hard time
Dr. M did more in surgery to be cautious. He too my shunt out and tested it to make sure it had no malfunctions. I think taking the shunt out and placing it back has caused some added pain but at least I know my shunt is working correctly.
Dr. M did a shunt tap during surgery and my pressure was very low which was expected since I have been over draining for so long. Dr. M expected it also.
I found out that my surgery was delayed because a child had a brain tumor and needed surgery. I was told it was an emergency. I remember I was that child in 1983 needing surgery. I hurt for that family because I can still remember the questions and confusion that came when I had my first surgery.
Dr. M did a shunt tap during surgery and my pressure was very low which was expected since I have been over draining for so long. Dr. M expected it also.
I found out that my surgery was delayed because a child had a brain tumor and needed surgery. I was told it was an emergency. I remember I was that child in 1983 needing surgery. I hurt for that family because I can still remember the questions and confusion that came when I had my first surgery.
first morning I woke up at home
For about 30 minutes my headache did not hurt me near as bad as last night. After being awake about an hour I've got a headache at about 50 percent of what it was yesterday. I have small head rush pains when I get up or move around. But thank God its not like it was.
This gives me hope that it will get better. I fear being stuck with the severe pain and major head rushes after all the pain I've had over the past 9 years.
This gives me hope that it will get better. I fear being stuck with the severe pain and major head rushes after all the pain I've had over the past 9 years.
first morning I woke up at home
For about 30 minutes my headache did not hurt me near as bad as last night. After being awake about an hour I've got a headache at about 50 percent of what it was yesterday. I have small head rush pains when I get up or move around. But thank God its not like it was.
This gives me hope that it will get better. I fear being stuck with the severe pain and major head rushes after all the pain I've had over the past 9 years.
This gives me hope that it will get better. I fear being stuck with the severe pain and major head rushes after all the pain I've had over the past 9 years.
Monday, August 23, 2010
I made it through surgery
This surgery went different than any other revision I have had. It has been difficult getting to the surgery day and after surgery has not been very easy.
I made it to the hospital a 8:00am I was suppose to be there at 9:00am. I was going into surgery early but my surgeon was caught up in surgeries from the night before from all they would say was a "gang thing" so you can figure a bunch had shot their selves in the head or some craziness.
In the waiting room was family very loud and crying and my parents were taken to a different waiting room. In some ways I wonder the story behind all of it but it makes me made that these kids do these things to their selves.
So.....I had surgery and made it to recover and my room just fine. The first nurse came in really surprised I was really awake. I remember her asking if I always come out of surgery so alert. And well the truth I do.
I am not sure when things hit me but when they did it was like a ton of bricks. I never have nausea after surgery but it hit me then I started with the headache.
Every time I would move I would get a head rush and the nausea would hit me.
Sunday evening I started to settle down with the nausea and the headache calmed down some. So I came home today Monday morning.
Wow! I had a really bad ride home. The movement of the car jolted my head every move the car made. We stopped 4 times on the way home to give my headache a break.
I figure I will pay for that crazy ride home my head has been splitting ever since. So I hope I can sleep some of this off and maybe it won't be as bad tomorrow. I'm so glad to be home.
I made it to the hospital a 8:00am I was suppose to be there at 9:00am. I was going into surgery early but my surgeon was caught up in surgeries from the night before from all they would say was a "gang thing" so you can figure a bunch had shot their selves in the head or some craziness.
In the waiting room was family very loud and crying and my parents were taken to a different waiting room. In some ways I wonder the story behind all of it but it makes me made that these kids do these things to their selves.
So.....I had surgery and made it to recover and my room just fine. The first nurse came in really surprised I was really awake. I remember her asking if I always come out of surgery so alert. And well the truth I do.
I am not sure when things hit me but when they did it was like a ton of bricks. I never have nausea after surgery but it hit me then I started with the headache.
Every time I would move I would get a head rush and the nausea would hit me.
Sunday evening I started to settle down with the nausea and the headache calmed down some. So I came home today Monday morning.
Wow! I had a really bad ride home. The movement of the car jolted my head every move the car made. We stopped 4 times on the way home to give my headache a break.
I figure I will pay for that crazy ride home my head has been splitting ever since. So I hope I can sleep some of this off and maybe it won't be as bad tomorrow. I'm so glad to be home.
Friday, August 20, 2010
Tomorrow is surgery day
I'm getting nervous thinking about the surgery to come mostly because I know the pain and discomfort that goes along with surgery. I'm trying to remind myself that surgery pain does not last like the pain I have been in for months. (I'm trying to reassure myself like I would anyone else having surgery)
Its hard to believe I've been dealing with this since May. But if I think about it I never thought I would start having complications in 2001.
I hope to soon get back to blogging about other import information than myself. I'm so tired of being sick and tired.
I had a friend come clean my house yesterday. I thought I would help and took my sheets off my bed. I was shaking from fatigue as I put the sheets in the washer. I hate not being able to do anything for myself.
From past experience my fatigue is caused from low pressure. I have had this problem many times over the past 9 years.
Its hard to believe I've been dealing with this since May. But if I think about it I never thought I would start having complications in 2001.
I hope to soon get back to blogging about other import information than myself. I'm so tired of being sick and tired.
I had a friend come clean my house yesterday. I thought I would help and took my sheets off my bed. I was shaking from fatigue as I put the sheets in the washer. I hate not being able to do anything for myself.
From past experience my fatigue is caused from low pressure. I have had this problem many times over the past 9 years.
Wednesday, August 18, 2010
Saturday is surgery day
Talking to a friend this morning I realized I had not explained my surgery coming up in a while. I'm having an anti siphon device added to my shunt.
Ever since May when I had an extra long dentist visit where I was laid back in the chair too far causing Days of bruised headaches that never went away and fatigue that has increased. It has been determined that my shunt is now over draining or basically working too well. Collapsing my vents causing slit vents.
The anti siphon device will slow down the flow of spinal fluid. Working kinda like a pinball machine when I move to a different possition where the flow needs to slow down a floating ball in the ASD will stop or slow down the flow of fluid.
Ever since May when I had an extra long dentist visit where I was laid back in the chair too far causing Days of bruised headaches that never went away and fatigue that has increased. It has been determined that my shunt is now over draining or basically working too well. Collapsing my vents causing slit vents.
The anti siphon device will slow down the flow of spinal fluid. Working kinda like a pinball machine when I move to a different possition where the flow needs to slow down a floating ball in the ASD will stop or slow down the flow of fluid.
Tuesday, August 17, 2010
4 days until surgery
Today I'm working on getting my bag packed to stay in the hospital. I pack for up to a week but hope to only stay a night or two.
Monday, August 16, 2010
Today was suppose to be surgery
I've got a few more days to get ready for surgery. Since having to delay my surgery I have lucked out and found a great lady to help me in my house. Maybe this is the reason things had to be delayed.
I have been needing someone for a long time. There is just so much I can't do in my house that I need help with and having to stay in bed most of the day does not help.
I have been needing someone for a long time. There is just so much I can't do in my house that I need help with and having to stay in bed most of the day does not help.
Thursday, August 12, 2010
things happen for a reason.....right??
I keep trying to remind myself that things happen for a reason but when ever since I got the call today that my surgery has been put off another 5 days I have been really depressed. I was told it was because of an emergency. So instead of having surgery Monday I will be having surgery Saturday.
I've laid in bed since May looking straight up I guess 9 more days won't kill me.
I've laid in bed since May looking straight up I guess 9 more days won't kill me.
Monday, August 9, 2010
fatigue from low pressure is killing me
I often break down crying cause I just can't handle the fatigue. When I say fatigue you thing I'm tired. I want to explain a bit better. A adily bath is a chore.
Something simple that we do to wake up and start our day puts me in the bed for up to 3 hours or more.
I wake up an hour before my animals eat to take medicine just so I can feed them.
I'm crying right now cause I just washed my hair and got a phone call. My heart is pounding. I've got 7 days to go.
Something simple that we do to wake up and start our day puts me in the bed for up to 3 hours or more.
I wake up an hour before my animals eat to take medicine just so I can feed them.
I'm crying right now cause I just washed my hair and got a phone call. My heart is pounding. I've got 7 days to go.
Saturday, August 7, 2010
9 more days
I'm not looking forward to surgery. But I'm looking forward to getting it over with. I was exercising and loosing weight. I have lucked out still eating right I have lost a few pounds. But I could have probably reached my weight loss goal by now if not for this pit stop.
Hopefully in 3 weeks or so I can start walking a couple of minutes on the treadmill or walking in the water again.
I really miss getting to workout. I think it is part of the reason why I'm so depressed. I'm sure being stuck in bed is not helping either. But the exercise did help.
My fatigue will barely let me take a bath everyday. Most people think just jump in the shower and jump out. Its like a project for me because it exhaust me so bad.
Hopefully in 3 weeks or so I can start walking a couple of minutes on the treadmill or walking in the water again.
I really miss getting to workout. I think it is part of the reason why I'm so depressed. I'm sure being stuck in bed is not helping either. But the exercise did help.
My fatigue will barely let me take a bath everyday. Most people think just jump in the shower and jump out. Its like a project for me because it exhaust me so bad.
Thursday, August 5, 2010
I'm back to blogging on black berry
I had to download a different browser but at least I can blog again. Its just too much right now for me to sit up at the computer and blog that is the reason you have not been seeing me post.
I do everything from my blackberry. From answer the phone to blog to watching the news. Thank goodness I'm up and running again.
I do everything from my blackberry. From answer the phone to blog to watching the news. Thank goodness I'm up and running again.
Wednesday, August 4, 2010
What is today?
I'm really down and depressed. I am happy that the days are getting less though. I will be so glad to not be in the prison I call my bedroom. I've been laying here since May trying to keep my vents from collapsing. Every time I would buck and do something I ended up in the ER.
So I have learned patients.... that I have none. I have learned my friends.... that they will put up with my text any time of the day and be there for me. I have learned love.... I can feel some one's love without them being here in the room with me. I have learned faith.... God does answer prayers in his own time. Sometimes we have to pray a little louder to be heard.
So I have learned patients.... that I have none. I have learned my friends.... that they will put up with my text any time of the day and be there for me. I have learned love.... I can feel some one's love without them being here in the room with me. I have learned faith.... God does answer prayers in his own time. Sometimes we have to pray a little louder to be heard.
Sunday, August 1, 2010
August 1st
Their is so much going on right now I don't know where to start. My black berry wont blog for some reason so I have not blogged in a while because honestly I spend most my time trying to keep my head from exploding. Got to get the blogging thing fixed i just dread having to go to the cell place to get help. The headache thing again you know.
Last week my niece came to see me and brought presents. I was so happy to get to see her before my surgery.
Oh about my surgery! 15 days to go!
This morning I got woke up by my best friend, Michelle crying. I could barely understand her say. " He's Dead!" H's boyfriend was killed in a car wreck last night. Her oldest daughter. I'm in such shock over this. It's not right for someone so young to die like this. He was text H at the time of the wreck. So his last thoughts were of her.
I'm suddenly remembering a boyfriend sometimes best friend depending on the week. I still hurt over him and pushed my best friend now away for along time because she reminded me of that hurt. I regret that now but I had to deal with my pain on my own.
Last night I went to Chell's for a short while(all that my headache would allow) and we talked about H's new boyfriend. She was so pleased at how nice this boy was and what a good fit he was for her daughter.
Also my niece has a buddy that is home schooled his older sister has been missing for 4 days now. The gps on her phone cant be traced and no one has heard from her. The police are searching but nothing has turned up.
Last week my niece came to see me and brought presents. I was so happy to get to see her before my surgery.
Oh about my surgery! 15 days to go!
This morning I got woke up by my best friend, Michelle crying. I could barely understand her say. " He's Dead!" H's boyfriend was killed in a car wreck last night. Her oldest daughter. I'm in such shock over this. It's not right for someone so young to die like this. He was text H at the time of the wreck. So his last thoughts were of her.
I'm suddenly remembering a boyfriend sometimes best friend depending on the week. I still hurt over him and pushed my best friend now away for along time because she reminded me of that hurt. I regret that now but I had to deal with my pain on my own.
Last night I went to Chell's for a short while(all that my headache would allow) and we talked about H's new boyfriend. She was so pleased at how nice this boy was and what a good fit he was for her daughter.
Also my niece has a buddy that is home schooled his older sister has been missing for 4 days now. The gps on her phone cant be traced and no one has heard from her. The police are searching but nothing has turned up.
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