Life goes on

Sometimes I wonder why life keeps throwing things at me to stress me out. I have never ask why me even when I was little in the hospital. I did ask my mom why I was not on the news like Nancy Regan for having brain tumor surgery ( at 8 years old I did not realize all the other children in the world going through the same as me. I felt like I was all alone in my journey)

With my head hurting everyday and body aches endlessly going on the world still hands me lemons. While being out of power for 8 days I stayed with my parents. Pepper loves Momma and Daddy. But I guess like candy we can all have too much of a good thing. On day 3 of staying with my parents Pepper was up all night and acted as if he had had a stroke the next day. But meds helped him out. Mostly he slept but I rather him sleep than stress and worry trying to go home and not understand why we could not go.

Then Christmas evening he sprained his hip. Well I took him to see Dr. Scott yesterday because I am still having to carry him everywhere, he can't go up steps, walking on 3 legs and is not wanting to drink or eat much.

Dr. Scott reassured me it was a sprain and gave us some pain meds to help him through the healing. And we all thought only people could get hurt on the ice.

I got super stressed and ill with the power people they came Christmas eve and got every ones power on around me but my house. I called and was promised someone would fix it first thing the next morning. Christmas Day... Well no one came. Day after Christmas finally a guy came to see it was a fuse that needed to be replaced. In 2 minutes I had my power.

I had been taking up for the workers of the power company until I called 2 days before Christmas and they told me a total lie that they were working on Teague road.

During the storm my Granny's dog died. She had had her dog for over 15 years.

This morning I found out my niece had to re home her puppy because her mom is going through a divorce and having to take on all the house hold bills and they are both grieving over him not being there. My heart is aching for them both. Although it was the best decision for the puppy it is still hard to deal with knowing he is gone.

I'm at a loss I want to help but I don't know how.

Things I realized while living with my parents for 8 days

1. I love my parents but I love living in my own house
2. My parents will do anything to make me more comfortable and help me hurt less even if it causes them pain
3. I'm addicted to the news
4. I need my own TV
5. I'm addicted to M.A.S.H.
6. I'm addicted to the internet
7. I'm addicted to facebook
8. I love my home
9. I could live with my parents but I rather not
10. I really, really rather not
11. I need a generator
12. When the power goes out pack for a week instead of over night
13. I always thought Daddy could walk on water...but I now know he can't if it is frozen
14. I hate... hate...HATE!!! my mother's couch and the piece of foam in it that is suppose to be a bed
15. Pepper loves his new happy pills
16. Supermom invited me to camp out at her house when I was in need ...said I could take a shower at her house ( she had strangers staying over and showering during the power outage)
17. Supermom made my parents really happy checking on me everyday
18. My cell will log into facebook and myspace(wonder how much that will cost me) I was in need of a facebook fix
19. People don't care to lie to you when you are stressed and needing help ( 23th we called to find out anything about our power and the lady told that there was a crew working right then on Teague road... withing minutes we found out it was a lie because we went looking for them, we were going to fix contry ham biskits and coffee)
20. I wanted a battery operated Tv to be able to watch the news ( got this for my birthday... it was ordered before the snow storm, glad my parents could read my mind)
21. I'm lost without the news and the internet
22. I love my home!!!

Blizzard 2009

Snow goes on and on and on

Monday after the state contracted loggers to come in and clear the roads. Even a bulldozer can't get all the ice.

Daddy cleared a path to get some traction on the road but exposed a lot of ice.

Can't even tell that Momma's Blazer is under that snow...Believe it or not to the right was a pretty white pine. It has broke limbs that has taken most of the fluff of the pine tree away.

Thank goodness for having the side-by-sides to get from Momma and Daddy's house to mine. I left Ginger at home until it got below 40 in my house.

Everyday I was having to go home because I needed clothes,medicine, food for Pepper and Ginger.

Pepper did not do good through this storm. We were having to stay at my parents and when we let him out he would try to go home. He was not sleeping good and we got up Tuesday or Wednesday morning and he had been up and down all night and then just would not move off the couch. I worried it was a stroke but hoped it was stress. I called his doctor and he called him in Valium. This helped him sleeping.

Christmas day Pepper was outside and tried going home once again as he was coming in he went to jump up on the steps to the front porch and his hip slipped. This has happened before but always gets better or well...it slips back in by an hour or so. He still wont put much weight on his hip so it looks like we will be seeing Dr. Scott in the morning.

Granny lost her dog in the storm. A transformer blew and her dog got scared and ran under Granny's car. We think she had a stroke. She was a very old dog that had come to granny's house as a stray.

Granny lost all her stuff in her refrigerator. I also lost everything my fridge and deep freezer. I had thought to put things out in the snow but it was so bad and we were staying busy trying to get the power back on. And we also fixed soup and coffee for a neighbor that had only gas heat but no way to cook.

The next 8 days

Barn that fell in the road going towards granny's.

Friday when it first started snowing my mom tried to get my granny to come up to her house befor the power went out because my parents were sure it would go out. But as usual my granny was in denial that it would snow much and would not come. She also did not think the power would go out and stay out the way it did.

What susprised all of us was all the trees that fell because of the snow. There are pine trees dieing in our area. Jack pines, they were not a pretty pine tree before the pine beetle started killing them out but are worse looking and troublesome because they are soft wood and fall for no reason.

Saturday Momma tried to get Granny on the phone but her phone was out.Saturday Daddy decided to go get Granny when we were sure the power was not going to come back for a while. Between my house and Granny's is about a mile. In the straight before you get to my Granny's were 15 jack pines frozen in the snow Across the road. You could not be sure where the trees layed if they were on the creek bank or in the creek.

Daddy came back home and called the state thinking they could safely move the trees and clear the road. The tractor is 4 wheel drive but there was so much ice it could not get traction. So it was not safe to try to move the trees. ( note to self and Daddy get chains for tractor)

After 2 days of no power and not being able to get to granny my Dad had decided to walk through the trees and try to get to granny. But she is 81 there was no way he could walk her back out. But we fixed coffee and soup to take into her.

This was also a stressful issue for my dad to be trying to walk in the snow through downed trees,ice, right near the creek. We worried about him falling and getting hurt or falling in the creek. But it was becoming to not be an option. We were worried.

Mini-me's mom had gone without power also but thought she would drive in as far as she could and walk in to get Mini-me. This was great she could hopefully get to granny by coming in the other way.

Steph called when she got to Granny's a barn had fell in the road and several trees. There was a tree blocking Granny's drive so Steph had to climb over and walk up to granny's house. She was really shook up and shivering. She talked to Momma on the phone and kept asking why her or Daddy had not come to get her. Momma had a hard time explaining to her there were trees down and frozen in the snow. But she got to see them.

The plan was for Steph to drive as far as she could and Daddy was going to drive to meet her as far as he could and walk Mini-me to her mom. Luck was on our side. Someone was able to get some of the trees out of the road enough to make it up to our house.

The worry I had about granny and Steph driving on these bad roads I was hurting but it did not matter. Steph saved our Granny's life. I don't think she would have made it another night in the cold.

Steph took Granny to my aunt Karen who could get her to a doctor if need be. We worried that the stress of the snow and no power she would get sick. Plus Karen had power. We had a small generator that could power a few things in the house. Mostly 110. Anything that tool 220 volt was too much for it but we were pretty warm.

December is a month of Birthdays...

December 8th is Steph's birthday. Christmas eve is mine.

Christmas is Jesus' birthday.

The day after Christmas is my Mamaw's ( she died 3 days before I started having complications in 2001.

Today is my Uncle Tommy's Birthday ( Mamaw's oldest son and Daddy's oldest brother).

Pepper's glad to be home

Loving his Christmas pillow infront of the fire...

Christmas Morning

I woke up Christmas Morning grabbing for pain medicine and here my dad letting Pepper out and getting a cup of coffee and telling my mom. " I feel like I have died and gone to animal planet...lol"

Pepper gets up through the night and goes to the bathroom and Ginger plays at night and is on patrol going through the house as a night watch kitty.

Daddy gave me,Pepper and Ginger his bedroom because we all 3 ramble at night. I'm up because of headaches and pain from aching. I know last night he was thankful to finally have a good nights sleep in his own bed. He also wanted me to be able to lay down during the day. I often half to lay down to try to reposition for my headache and fatigue just gets the best of me.

Momma opening presents.

Yes my cat leads. I would put her lead on her from time to time to keep her from rambling and playing too much. Daddy was only so patient. At 5 years old she is very active and loves to run through my house.

Pepper loves to open presents. It is so cute how he knows his stocking and will go and tear it down to get us started opening presents.

Had a White Christmas

I have not been able to blog since last Friday. Actually I could not get on the Internet or stand the cold in my house either.

Friday morning it started snowing about daylight and school was canceled so my parents went and got my niece and brought her to my house. I was super excited for the snow it was beautiful. I love getting to share my excitement with Steph's mini-me. The snow layed on the trees and stuck to everything.

I was eating supper with mini-me at about 6:00 and watching it snow when my power started flickering. Then it died. I had no idea I would be staying with Momma and Daddy through Christmas. I grabbed candles and we ate by candle light planning to play in the snow and make a snowman the next day.

We ended up with over 13 inches of snow. The snow was beautiful. But things got stressful over the next few days.

POWER!!! POWER!!! POWER!!!

Merry Christmas to me!!! Merry Christmas to me!!!

I finally got my power back!!!

Merry Christmas to me!!!

Jumping for Jack

In-Depth: Jumping for Jack

Published : Tuesday, 10 Nov 2009, 6:51 PM CST

MINNEAPOLIS - For years a little boy from Zimmerman has fought to keep up with his friend. But thanks to an amazing procedure, he is getting his spring back in his step.

John and Tara Borchardt love seeing their son, 5-year-old Jack Borchardt, physically active after struggling for so many years.

The Borchardt’s first noticed something was off when Jack was 18 months. They dismissed it because he was five weeks premature and doctors warned them Jack might be a little behind. Then, at two and half years old the differences became more noticeable. He couldn't even walk the stairs without using his hands to balance.

A year later doctors scheduled an MRI to diagnose Jack with Hydrocephalus. Hydrocephalus is a build-up of spinal fluid in the skull causing brain swelling. At the same time doctors discovered something on the back of Jack's brain.

Nurse Practitioner Terri Schultz of Gillette Children's Hospital says that cyst is caused by a rare syndrome called dandy walker, a congenital brain malformation in the cerebellum. Dandy Walker, which is found in one in 25,000 births, affects muscle development and causes delays in fine and large motor skills.

While there is no cure, it can be treated by surgery. The device called a shunt allows doctors to drain as much or as little spinal fluid as needed from the brain to the abdomen where the body reabsorbs it.

Dandy-walker is usually diagnosed around the age of one and early detection is key to successful treatment.

"Yes" he groweled in protest

I know, I know I probably should not dress up my dog but honestly he is 11 years old and trembles when just the slightest wind hits him. He is not happy at all when I'm putting it on him but he gets comfy soon enough.

My mom could not believe I was putting this on him. I love his little trac suit. I got another one in black that you can't hardly tell he has on. He also has a carhart coat that matches my dad's. If I don't dress him when he has no hair he can't stay outside no time.

Pepper hope you are not reading this. Because Santa may be bringing matching track shoes...J/k!!!

Let it Snow!!!

The National Weather Service has issued a winter storm watch for Friday and Saturday. Forecasters say snow will move into the mountains Friday. A mix of rain and sleet is possible. Areas south of Interstate 40 are expected to get up to 4 inches of snow, up to 6 inches around Asheville and 10 possible east of I-26 along the BRP.

Yea!!! I'm hoping we really get this snow. I'm sorry for everyone that has to drive in it. I actually like driving in it except for the ice. If it rains or snows I'm going to have the weather Doppler headache anyway and honestly I love the snow and can deal with the added headache for the chance to get a beautiful snow.

Worst day ever

So I have had worst days than what I had Monday. But I think the things that happened will never end. I had several things I needed to do so I knew it would take a while but I never thought I would come home have a Hugh cry and continue the things that happened on Monday the next day on Tuesday.

So my first visit is to the dentist. I missed my cleaning to my other dentist 6 months ago and I paid for it. I have to stay really aware of what it happening with my teeth because of the medicine I am on really works on breaking my teeth down. Even though I had missed my cleaning with my last dentist they (the dental team) could not tell I had not just had a cleaning that day. My gums are super healthy. So things were sounding really good. Wow!!! was I wrong.

I had a tooth that had abscessed several years ago when I had the faulty shunt and was on worst pain medicine than I am now. So it is root canal and capped. Well I was told it showed some decay at the very tip[ or the root. I thought "WHAT!!!"

At this time I had my mom come back because I was over whelmed I could not understand why or how this could happen. I have not had dental issues until I started having all the complications from my hydro in 2001. So a lot of what he was saying was not making sense to me. Then the dentist moved on. I have another tooth that needs a cap. Well he could fill it but it already had a couple of fillings already.

But it is not over. I also have 8 (small but still should be filled) cavities. Oh the things I deal with to try to make my pain manageable. This all just kills me. And totally makes me mad. But my Monday does not end here...

I go to renew my drivers license. As my blog remembers I was celebrating because my vision was 20/25 in both eyes at my vision appointment. Well taking the eye test at the DMV I was told I did not pass. She leaned back like a teacher that had caught me in a lie and ask "Where are your glasses?" I told her I did not have glasses. I told her about my eye doctor visit and she told me she needed proof. So had to take paper work to my eye doctor and pick it up the next day. The nurse told me all I needed was this paper work and DMV was not smarter than a doctor.

Well "Ms. Glasses on the end of her nose" thought she was. I handed her the paperwork she said the day before she could pass me with and told me to read the lines again. I said you told me yesterday I just needed proof from my doctor and you would pass me. And she starts stumbling over her words you still have to pass this test. So trying to keep from harming this old know it all I did it. Same results.

So she starts making phone calls. Asking the person on the line am I wrong? I know I'm not wrong. So then she calls medical and says they are going to look into it. I ask what? You say I'm restricted to glasses I don't even have. She went ahead and gave me my temporary license and my others to be sent in the mail. But told me medical might still put restrictions on me. I was fuming. No telling what kind of picture I took. I'm sure it looked like a mug shot.

So I came out and called my eye doctor. The nurse said my vision was better than hers and she is not restricted to glasses. She told me I should have never been retested, the doctors orders should have been the final word.

I ask the nurse if it would have made a difference if I went to Asheville DMV instead of Marshall. She said yes you need to go to Asheville next time. So apparently I am not the first person this has been an issue with. Ms glasses on the end of her nose made me super ill talking down to me like I did not know what I was talking about.

So I'm not sure it the call to medical told her to give me my license or what. But it is still an issue wondering if this is still going to be continued with having to fight to keep some crazy restriction off my license.

I got woke up

I don't mine being woke up so much but I have this dull ache... OK, who am I kidding I have a Hugh headache that woke me up SCREAMING at me. " Surprise!!! It's raining!!!"

I reply to the headache..." Thanks, you told me this yesterday."

What is a Weather Doppler headache?

As I made an early morning wake up call to Supermom... Superdad aka hubby to Supermom broke in to our conversation to ask " What is a weather Doppler headache?" Guess I should have told him that is not the CP name for it. But it was a great chance to explain to another non hydro related person about how the weather and even changes in the moon effect us hydro peoples.

I explained that as weather changes with the barometric pressure it effects the fluid in our brain. The CFS will increase trying to protect the brain from the increase of pressure from the weather making our head hurt and body ache from the changes.

Just like the old wives tale that people are crazy during a full moon. It is an effect that during a full moon gravity is stronger and pulls the brain down and people without hydro often feel bad and are just plan ill and hard to deal with. But for us with hydro it does the same but we have more pain from the change because our fluid around the brain and spine is very sensitive to the changes.

I should have also told him how my balance gets worse and have coordination issues. But I will save that for another time. I think it is a point for my hydro peeps each time we get to talk to a non hydro related person about this ( our) condition.

TEAMHYDRO

Thinking about school

Actually I have been thinking about people I went to school with. I was able to keep my disability a secret in school but many kids were not that lucky. There were a few that remembered vaguely about my surgeries in the 2ND grade but not enough to say anything about it.

I saw kids be picked on about their disabilities and tried to defend them as much as I could without having to give up my own disability.

I wonder if those kids think about what they said to kids that had problems or what if
( heaven forbid) their child might have a disability and have to face kids being cruel. I would not wish anything on someone but as we grow up reality is not everyone is healthy and has the perfect life. I wondered back then if they were trying to hide their own issue by bringing attention to someone else.

First real snow

This seems to be the day we will see our first bit of snow!!! I have the headache to prove it will weather in some form. Right now we are seeing snow changing from slush one minute to white fluffy flakes.

I'm doing a snow dance even though it hurts my head I still love the snow...

Amazing

Yesterday I had my most dreaded eye doctor appointment. It was dreaded because each trip my vision had been getting worse and worse.

Since all the complications my vision has been my worst fear of loosing. I have constantly had problems with foggy vision, which I call dream vision. You know how you can always focus on faces and objects in your dreams this is what it was like full time. At times I saw like I had blinders on. The things they put on horses to make them look straight and not around them.

I've had 3 eye exams since 2001 each one I had a prescription for glasses because honesty I could not see. During all this I had a drivers license exam and was told I was legally blind without glasses.

I am still floored by what happened yesterday. The nurse examined me and told me through this machine it was showing 20/25 in both eyes. But she also said it had a bit of help with the machine. So ok... How bad will it be without the machine helping? I went to another exam room and what do you know... 20 over 25.

The doctor came in and remembered me coming in several years ago worried my eyes were trying to cross with the pressure build up like they had when I was a child. He is not my original doctor. Dr. Payne retired. But Dr. B was telling us how extreme the surgery was that had been done. Using really big words that I totally did not get. But he told us it was unbelievable how good my eyes look now.

He has on file from Dr. P's files pictures before surgery and pictures after each following surgery.

I can't believe my vision is back!!! I had come to accept that the faulty shunt I had for over a year had done damage that could not be undone. I accept the constant headache and my balance is a bit worse. I just figured my vision could not correct itself.

I'm sure in time I may have to have glasses but right now... I DON'T!!!

Hydrocephalus is a condition in which excessive amounts of cerebrospinal fluid (CSF) accumulate in the brain. This can cause pressure that injures the brain tissues. Hydrocephalus is believed to affect one in 500 children, according to the National Institutes of Health (NIH). Adults over age 60 also are especially vulnerable to this condition.

Hydrocephalus is either present at birth (congenital) or develops sometime after birth as a result of injury or illness (acquired). The two major types include:

•Communicating. Occurs when CSF flow is blocked after the fluid leaves the brain cavities.


•Noncommunicating. Also known as obstructive hydrocephalus, it occurs when CSF flow in the brain is blocked at one or more of the pathways through which the CSF circulates.
Medical scientists do not fully understand what causes hydrocephalus. Many cases of congenital hydrocephalus are believed to result from a combination of genetic factors and developmental problems, such as exposure of the fetus to an environmental factor that influences brain development. Acquired hydrocephalus usually results from injury or illness.




Symptoms of hydrocephalus vary from patient to patient. A patient’s age and the progression of the disease often play a significant role in the nature of the symptoms. For example, young children are especially likely to experience a pronounced increase in skull circumference. Meanwhile, older patients may experience dementia, balance and coordination problems and personality changes.

Several techniques can be used to diagnose hydrocephalus. These include imaging tests of the brain, intracranial pressure monitoring and spinal taps. Treatment usually consists of a surgical shunt system that diverts excess CSF from the brain to areas of the body where it can be absorbed. Medications and spinal tap procedures are also available to relieve pressure caused by excess CSF.

In most cases, hydrocephalus cannot be prevented. This is especially true of congenital hydrocephalus. However, people can take certain steps to reduce the risk of acquired hydrocephalus (e.g., wearing a helmet when riding a bicycle).

The prognosis for patients with hydrocephalus varies, but prompt treatment is essential to improve the odds of a positive long-term outcome.

Bringing Christmas to a Hydrocephalus Family

JUST BELIEVE was a program created to help one family that is dealing with the struggles of a chronic illness during the Christmas season. It is our hope that we can bring some joy to those that need it most. Dealing with a chronic illness brings financial strains to families that often result in parents not being able to afford the basic necessities for their children. Our goal is assist a family that needs our help.

This is our first year and we have chosen Sara Inman and her son Kadyn who has Hydrocephalus. Sara is a single mother and could definitely use our help. Kadyn is two years old and has never celebrated a Christmas at home.

If you are interested in helping us out please let us know by contacting us through e-mail: Jenn.Bechard@gmail.com. We will then contact you with their wish list.

We need all donations by 12-13-09 to allow us time to prepare everything for delivery to the family by Christmas.

Thanks for your help and may you all experience joy, peace, and an abundance of blessings during the Christmas season.

Sincerely,

Jennifer Bechard & Denise Bechard

Weather Doppler Headache

I woke up with a mild headache this morning. This is the usual. But my pain medicine does not seem to be helping when I hear the weather. We are suppose to get 1 to 2 inches of rain.

Just like many others with hydrocephalus I am very sensitive to weather changes. The rain is getting closer and my headache is getting worse.

Before 2001 when I started having all the complications I would feel bad when it rained but I did not have the headaches.

Actually I did not have headaches unless extremely tired or stressed. Which I think everyone has. So I wonder still did the complications cause my constant headache? I also wonder if it will ever go away. I am thankful for not having the fetal position headache as much as when I had a programmable shunt.