Always look at the positive

Yesterday for the first time since I have been a little girl I went shopping on a "Black Friday." Before I ever became sick in 2002 I worked in retail for Lowes for nearly 10 years and Sears before that.

All my "Black Friday" experiences have left me remembering all the grumpy people fussing about how they hated the holidays and hated having to buy presents! All Christmas was any more was a money racket!

I still get a sick feeling in my stomach remembering how much I got "Bitched" at ever year. It turned most of my coworkers against the holidays but I learned to kill them with kindness. Sometimes it worked.

Sometimes I was just over it! "Yes! you are right why not just stop buying presents!" But then  I would be told well we can't do that! But Why??

I think it really bothered customers that I told I loved the holidays. I would get a response of it was just about buying presents. I loved getting to tell that I loved to give to the "Angel Tree." I also woulds ask about if they did anything like that. You could tell the ones that were telling the truth. They would repeat their self and stumble over their words.

Its true I love Christmas. I love giving presents. Not to get anything back. Just because I see something that makes me think of that person. I think I need get it for them. I wish I could afford to do more and get more for so many more people at Christmas.

I really enjoyed shopping yesterday. We did not get out and hit the break of dawn sales like some of the people. But we got out and found some sales still.

I think my friend I use to work with I now swim with at the pool said it best. "Monica aren't you glad we we don't have to deal with all that "Black Friday" craziness anymore"

We are both disabled now but had to both work together and deal with the same things. So we are trying to look at the bright side...lol

I feel warm fuzzy feeling

http://support4bryanstow.com/bit
 First thing this morning I went  to Bryan Stow's blog and saw this amazing picture. It seems since Bryan's accident it has brought his family closer together. I think this is so special.

I admire his family and being here for Bryan like they have. I have to be honest I'm a bit jealous of how Bryan's family has really been there for him. I like think when I have family sick my family would come come together and become closer from something like this.

But reality of life. My family does not work this way. I am so so very thankful for the best mom and dad in the world! With out them I would have no one...I do have the most amazing friends in the world!!!

They are exactly what a family are suppose to be like. If it was not for my mom and dad I would not have any family.

My Granny will do anything in the world for me but she has never had a drivers license.
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I did have my Mamaw up until 2010. But honestly no matter how much I thought I have done and been good to my family over the years they live their own life.

No one realizes hydrocephalus is a life long condition!

I have wonderful friends that have come to love me more than my family ever has.

I'm so happy for Bryan Stow To see him and his family together I know this is am amazing Thanksgiving

I was really excited to see Gabby and Mark Kelly serving Thanksgiving dinner yesterday. I know my post is all over the place today. Gabby only used her right hand but you could see she has come a long way in her recovery.

For Gabby having to stand and for long periods of time was like a therapy session in itself.



http://www.nydailynews.com/news/politics/gabrielle-giffords-serves-thanksgiving-dinner-military-retirees-tucson-base-article-1.982411

Happy Thanksgiving!

There have been several holidays my parents and I have put on hold because of me being sick with my hydrocephalus. But I am so thankful this Thanksgiving I an feeling like enjoying the holiday.

All the years of my life growing up my Thanksgiving and Christmas has always been spent with my parents and my mamaw. Now its just the 3 of us since mamaw died.

Recently in the past few years granny, my momma's mom has started eating with us since it is just too hard for her to cook on her on.

We have traditions we like to do to help some close friends and neighbors that have helped us over the years and been here for us. When we fix our Thanksgiving and Christmas dinner we fix a meal and take to several different neighbors that don't have family or are in need of help.

Two of the neighbors have passed away this year so we don't have as many to take dinners to... It's a good feeling to know you can take a dinner to someone that is unable to get out and go to relatives for the holiday.

They always go through their houses to find me a gift in trade when all I really wanted is to get to give them this gift... I love being able to give... This is why I love Christmas. I love giving...

I really do have so much to be thankful for. Even if I only have my momma,daddy and granny to spend the holidays with. I have so much to look back on from this past year.

I'm thankful for making it over a year and I think I have a shunt system that is going to work for a while.

I am thankful that Deanna moved back home because she is just like my family. She must have known I really needed her because I don't have much family left.

I am so thankful for all my friends the past 5 years I have found at the YWCA. They all love me and mother me and worry about me and my mom. More than any of my own family ever has.

It just proves family does not have to be blood kin to you. If we don't show up to work out someone will call to check on us.

When my mom had surgery the ladies worried their selves to death.

I am thankful for my life even if its not perfect.

I can't forget... Which I almost did... HAPPY BIRTHDAY!!                    GRANNY!!!

Happy Birthday Granny!!!

Took Granny out for her birthday yesterday. She will be 83 Thanksgiving day.

I am thankful to still have my Granny. I lost my Mamaw in 2002.

I love Pigeon Forge

Yesterday I got to test my shunt going through the  Tennessee Mountains and and curves that usually really give my headache a really bad time. I got to enjoy a day of shopping and Winter Fest Pigeon Forge.

My parents and me had not been to Pigeon Forge in over a year. A lot has happen since we have been there last. This trip was a lot better than last. My mom was miserable the last the last trip. She was unable to walk in hardly any of the stores.


My mom and I both have been doing the protein diet and exercising in the gym plus I'm doing water aerobics and my mom does some water exercise also.

I am so proud and happy that she is loosing and actually not hurting as bad. I was so excited when we were able to shop together yesterday.

She still had some pain at the end of the day but my back had started to hurt too. I was ready to go home at the same time she was.

Getting ready for Christmas

Here is a picture of my Christmas tree from several years ago... I love the holidays. I love my Christmas tree. If you know me you know it's more than just a Christmas tree. Its years of memories.

Every ornament on my tree has a story. I have ornaments to represent important members of my family. When I had my cousin to help put up my tree several years I have an ornament with her name the year she helped.

I have deer ornaments to represent my daddy's love of deer. my papaw use to bird hunt so I have pheasants to represent him. Blue birds and yellow bird for my Mamaw. Red birds for my mom.

I of course love purple and carousel horses. Actually any kind of horses. I know red and green are more Christmas colors. But it would not be me if it was not purple. I have to be different.

I also have ornaments of my first dog, Cricket, on of my very first. He was nearly 15 when he died. I never thought I would love another dog as much as I loved Cricket.

I love putting up my tree but have not been able to for several years because of being sick and not feeling good or having surgery near Christmas.

The big tree is always hard to get put up too... So I have substitute trees... They are sad compared to my big tree. I have not even taken a picture of the mirror them. Just because...

This year its been one year since my last surgery. I'm putting the "BIG TREE" up this year! yesterday my dad took that HORRIBLE! carpet off my wall behind the other tree and replaced it with really cool mirrored tile!

I have wanted that carpet down since I bought my house. So now its gone. I think will look great with the lights twinkling in the mirror.

Gardening

As many of my close friends on here know I live beside my parents. With that I get to share many meals with them.

Something My dad still does is grow a garden. I start a lot of seeds as you all saw in my inside greenhouse.

Every year the garden gets a good bit smaller. Momma and daddy still can and freeze certain things they just don't like buying or you can't get the same same thing or quality in the grocery store.

They can greasy cut short beans, mustard and collard greens. Then my daddy loves to put up relish which is just like salsa with a sweet taste.

We still have an area for tomatoes and peppers. Then we will always still have to raise beans, some squash, just enough to eat.

We had been talking about this for a while but I figured it would be a while before we went through with the project.Then I saw my dad com home with the trees...

27 Trees! Yes! We had one apples tree... We now have 27! Daddy was so excited over all the trees he set them all in 2 days... I think his wrist is broke. j/k

I found this picture of a apple tree in bloom. I forgot how much I love the bloom of apple trees. They are beautiful. We have 17 different kinds of apples. My dad even made a grid to know where every tree was. I'm working on what they need for the winter.



In spring we are getting a beehive to help pollinate. I hope to learn to make candles from the honey comb. So anyone with any kind of advice. I'm willing to learn...

Getting Back to Gabby

If you were like me you missed the interview with Gabby. Thanks to my online friends and great supports groups I got to see it. Here is the link:http://www.facebook.com/l.php?u=http%3A%2F%2Fabc.go.com%2Fwatch%2F2020%2FSH559026%2FVD55153303%2Fgabby-giffords--mark-kelly-courage-and-hope&h=3AQFLK-kGAQHeGCNb-0BN4rcBoN5vzmVPWEl8ORlfHsjWJg

I really liked the fact that we got to see Gabby's recovery step by step. It brought back memories of my own recovery from my brain tumor.

Things have advanced so much in these different therapies as I watch them use song to get her to help her memory.

I wonder if anyone else notices her voice is like it was when she was a child. Small and timid. She does not sound strong and confident like she once did.

Many of my friends were very disappointed that hydrocephalus was not brought up in the interview. But this interview I think was more about the book and her recovery. I would like to read the book.

I think when she "gets back to gabby" she will look more into hydrocephalus and hydrocephalus research.

Repost from December 29,2009

Sometimes I wonder why life keeps throwing things at me to stress me out. I have never ask why even when I was little and in the hospital. I did ask my mom why I was not on the news like Nancy Regan for having surgery for my brain tumor ( 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 medicine thankfully helped him out. Mostly he slept but I rather have him sleep than stress and worry trying to go home and not understand why we could not go.

Then Christmas going out to use the bathroom Pepper sprained his hip. 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. 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.


I saw someone had been looking at Ginger's picture. Which gave me the warm fuzzy feeling. Then I read the post close to her picture. I really love snow!

My facebook friends tease me about snow dances. Wow! did I eve think that one post would bring back a flood of emotions...

　

　

Who knew?

In 2002 I went through a 14 month nightmare. I had my nearly 20 year old shunt replaced for the very first time.

 Much I don't remember because of a faulty shunt. I had to be rushed every few days to few weeks to the ER four hours away. I was constantly told that it was nothing was wrong with my shunt!When I found another doctor to take out the shunt. He found numerous problem with the shunt I had. Before you ask no I did not sue... I worry another doctor will never help again. Plus I know nothing was done to me out of malice. I think...

If the Dr. F would have just stopped long enough to do the RIGHT tests! He would have seen in minutes just Dr. M did.

I have learned that you need an isotope study. Also called a nuclear scan.

Dr. M scheduled this test and I remember being really ill because I had been through the ringer with the firth Dr. F.

You are on a table with a tap in your shunt and dye put into the shunt the scan takes up to 2 and half hours to watch all the fluid go through your shunt. You can watch as your valve will release the fluid all the way from your shunt down to your abdomen.

But to get your shunt to open and flow like normal the scan is recorded while you are in different positions from flat to 45 degrees and on your side. Which on a rock hard table laying there is not easy.

After month of wondering if this was how I was going to die... This doctor saw there were problems with this shunt.

All the other doctor wanted to preach to me was "It's not the shunt!!!"

After having the isotope I remember telling my parents I had no idea there was a test to tell if the shunt was working.

I want.... No... I need to share this story with my hydro friends and other friends that read my blog. I have a very good friend that I met through blogging and she also has health issues.

This is one of the reasons we connected so well. Besides having just herself having issues health she has children with health issues.

Tragedy recently struck when here husband had an accident. You would think Melissa could not possibly add anything else to the list of possible things happening when talking to her. But things got worse...

As you know in my own personal blog post Pepper is my name sake for my blog because of the things he has done to help me while I have been sick. He was never trained as a medical aid but he bonded with me and has been here for over 13 years now.

I want you to read my friend Melissa's story. I have hurt with her all week putting myself in her shoes.

I could try to tell what happened but I'm just going to let you go to her blog and read what happened. Its much better this way.

http://pathsfromkeegssoul.blogspot.com/2011/11/rip-dixie.html

I need a hug:(

I like to keep ignoring what headache I'm having to deal with each day and keep making stupid excuses why things change. For the past week I have been so fatigued and feeling bad. I started out with a back pain...

Then I was blessed Monday with a crick in my neck.

My headaches have also been bothering me a bit more and suddenly... for the first time since I had this new shunt put in a year ago I can hear it draining when I stand up. So I hear this like click,click,click,click....

I'm really hoping this is not my shunt acting up...

Gloves are no guarantee your doctors hands are clean

This is not what I want to be reading as flu season approaches. i read this article last night telling how germs can go through the Latex gloves and they could be covered in germs.
http://well.blogs.nytimes.com/2011/11/08/gloves-are-no-guarantee-your-doctors-hands-are-clean/?ref=health

When my mom was recently in the hospital I observed signs saying you had the right to ask the staff to wash their hands at any time. My mom and another man had surgery with the day.They did very well. They are both older in their 50's.  

A younger woman, my age, ended up not doing as well. She developed a staph infection.

It always bothers me when doctors come in and start shaking hands. I know it's being nice and all but it really stresses the issues even more about about are they getting their hands clean enough.

Duggar's are pregnant with number 20

The Duggars of the TLC's reality show about them 19 kids and counting announced on the Today show this morning that they were expecting baby number 20. Baby 19 was born just 17 months ago 3 months premature.

The labor was dangerous and Josey was born with health problems. It really bothers me that after they have so many children already they still think they need more.

Many times when talking about the children they are assigned their number not called by name. So are we really seeing the true purpose they are to the family. In stead we hear what step in the family they are at in either 1 to 19 or 20.

Michelle said they did not mind if they had a disabled child. With her being 45. After having 19 children there is a possibility of disability in this next child.

Why would they not look into adopting a disabled child?

Guest post from president of WNC Brain Tumor Support group George Plym

Most people that would be reading this blog already has some knowledge about Hydrocephalus. But just in case they are newbies, here is the short version of what it is:

Hydrocephalus: a condition of excessive cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. Hydrocephalus may cause increased intracranial pressure inside the skull. The IICP could cause cognitive impairment and eventually if progressive, stupor and coma. Hydrocephalus is usually due to blockage of CSF outflow in the ventricles or in the subarachnoid space over the brain. It may occur after a brain infection (meningitis), brain hemorrhage or from a tumor compressing the ventricular system. Treatment is often by placing of a shunt. (ABTA)

How do you explain the condition to somebody else who has no idea how debilitating this condition can be? My example goes like this:

It is kinda like when you have a bad case of indigestion. Gas starts to build up in the stomach, causing pain. The pressure continues to build up in the distressed stomach, finally relieved with a belch or a “farinaceous abdomen radiate tension” (f.a.r.t. for short =-0). But when the pressure is in skull, there is no "release valve" if there is a blockage of the CSF in the brain. Many times, this is the case when a brain tumor has closed up the ventricles. Surgery in most cases is the common treatment. When the tumor is resected, the ventricles are again clear allowing the CFS to flow at normal pressures. It will take some time for the swelling to go down . In that time, the doctor may prescribe steroids. Because of the side effects, steroids should be used only in a short period of time.

There are cases where the patient will still have the symptoms even after surgery. In my case, all of the necrotic matter had accumulated into the ventricles. A spinal tap was used to relieve some of the pressure. But it would only lessen the pressure temporarily. After four spinal taps, a spinal drain was inserted. That allowed most of the "junk" to drain. As the fluid changed from an apple cider appearance to a clear liquid, the drain was removed and a lower lumbar shunt was installed. It was the best I had felt in years! It didn't hurt bending over or going up steps. Again I could pick up my grandchildren without pain! At least not a tremendous headache for a while…

But the ordeal was not over. Now I had major pain in my stomach. Every breath I took there was pain. Too often, shunts need to be revised. Instead of going through a revision, I opt to have the doctor just go ahead and remove the shunt completely. It did its job as in lowered my CSF from outstanding pain to tolerable pain! Like many of you, I have good days and bad days. Appreciate the good ones!

George is world known as a long-term brain tumor survivor, being diagnosed in 1967 with an astrocytoma. He went on to have 11 more brain tumors in over 44 years, along with two other cancers. He now has another tumor, although it is a different type. He now has a meningioma caused by radiation. He is the founder president of WNC Brain Tumor Support in Asheville, North Carolina and is also a member of the Wake Forest University Comprehensive Cancer Center Regional Advisory Board Winston-Salem, North Carolina. You can view his website which is:

Personal website: www.braintumorsurvivor.webs.com  Organization: www.wncbraintumor.net

INCREASED INTRACRANIAL PRESSURE (IICP)

Some patients with brain tumors develop increased intracranial pressure. IICP occurs for several reasons:

·       An increase in the mass within the rigid bones of the skull because of tumor growth

·       Blockage of the flow of cerebrospinal fluid (CSF)

·       Swelling of the tissue around the tumor due to the accumulation of fluid (edema)

When a tumor blocks the normal flow of CSF within the brain, hydrocephalus occurs. Hydrocephalus causes increased pressure within the skull, and the increased pressure damages the delicate structures of the brain.

Symptoms of IICP are:

·       Headache usually just after waking and lessening as the day goes on

·       Vomiting usually just after waking, with or without nausea

·       Mental changes, often sluggishness or drowsiness

·       Uncoordinated, clumsy movements

·       Seizures

Obstructive and Communicating Hydrocephalus

What is Obstructive Hydrocephalus

This is an increase of cerebral spinal fluid (CSF) in the brain. It is caused by a blockage of CSF flow within the parts of the brain. This prevents CSF from getting to areas where it will be reabsorbed. Tumors, cysts, or birth defects ... Read More »

 

Source: http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION...

What is medical definition of obstructive hydrocephalus ?

-sef´ah-lus communicating hydrocephalus that in which there is free access of fluid between the ventricles of the brain and the spinal canal. noncommunicating hydrocephalus obstructive h. normal-pressure hydrocephalus , normal-pressure oc... Read More »

 

Source: http://medical-dictionary.thefreedictionary.com/obstructive+hydro...

Hydrocephalus - Wikipedia on Ask.com

 

Communicating hydrocephalus, also known as non-obstructive hydrocephalus, is caused by impaired cerebrospinal fluid resorption in the absence of any ...

wiki.ask.com/Hydrocephalus

Obstructive Hydrocephalus | Life123

 

Obstructive Hydrocephalus Answers to Common Questions What is Obstructive Hydrocephalus? This is an increase... is medical definition of obstructive hydrocephalus ? -sef´ah-lus communicating hydrocephalus that in which there is free access

www.life123.com/question/Obstructive-Hydrocephalus

Communicating Hydrocephalus | Life123

 

the ventricles of the brain and the spinal canal. noncommunicating hydrocephalus obstructive h. normal-pressure hydr... http://medical-dictionary.t... Communicating Hydrocephalus Answers to Common Questions What is communicating hydrocephalus? n. A form

www.life123.com/question/Communicating-Hydrocephalus

What Is Communicating Hydrocephalus | Life123

 

the ventricles of the brain and the spinal canal. noncommunicating hydrocephalus obstructive h. normal-pressure hydr... http://medical-dict... What Is Communicating Hydrocephalus Answers to Common Questions What is communicating hydrocephalus? n. A form

www.life123.com/question/What-Is-Communicating-Hydrocep...

Obstructive Hydrocephalus - Nervous System Diseases

 

Obstructive hydrocephalus is a form of hydrocephalus which is caused by some visible blockage in the flow of cerebrospinal fluid. Learn more about it here.

www.nervous-system-diseases.com/obstructive-hydrocephal...

The Johns Hopkins Headache Center | Obstructive Hydrocephalus

 

Obstructive Hydrocephalus is a potentially dangerous condition where the normal drainage of spinal fluid out of the brain's ventricles is blocked and the resulting ...

www.hopkinsmedicine.org/neurology_neurosurgery/specialt...

Common Drugs and Medications to Treat Obstructive Hydrocephalus

 

WebMD provides a list of common medications used to treat ObstructiveHydrocephalus.

www.webmd.com/drugs/condition-1052-Obstructive Hydrocep...

LOOK!!! what Bryan can do!

Bryan Stow's Family is celebrating! This picture of his name is What his sister's posted on their blog. They said the picture spoke for itself... Truly it does!

http://support4bryanstow.com/News-Updates

Before Halloween there was an update reporting that while sometimes his memory was off for his injury his memory was incredible. They spread out about 3 hours of physical therapy and occupational therapy through out the day.

Bryan complains often of his pain being a 10 out of 10. I know the pain tires him very easily. It's so hard to push yourself when you have so much pain.

Adult hydrocephalus second-opinion Progrgram

In researching about normal pressure hydrocephalus I found a place in Maryland that does second opinions for people over 18 with suspected normal pressure hydrocephalus. You can find more information here http://www.lifebridgehealth.org/Main/RemoteSecondopinionProgramforAdultHydrocephalus.aspx?cpsys_redirect=404

If you have had a doctor that has already diagnosed you with hydrocephalus you can ask for another opinion through this second opinion program.

As I am reading this more though It's not covered by insurance... I was doing a blog post on this thinking it was a really good thing. I'm not so sure I am a fan of it now. We can ask for a doctor to do a second opinion. Plus... our insurance will usually cover it.

I'm not sure how I feel about this any more.

Types of Hydrocephalus

When you look up the types of hydrocephalus we find 2 types congenital and acquired. You will find a basic definition. But a definition this does not explain how it occurred in each patient. This is why I like hearing other people’s stories. We can all learn something from each story because we are all different.  

Congenital hydrocephalus is the buildup of excess cerebrospinal fluid (CSF) at birth. Acquired hydrocephalus caused by injuries or conditions that develop after birth such as homage, meningitis, head injury, tumors and cysts.

Hydrocephalus can arise before birth or any time afterward. It may be due to many causes including a birth defect, hemorrhage into the brain, infection, meningitis, tumor, or head injury. Most forms of hydrocephalus are the result of obstructed CSF flow in the ventricular system. With birth defects, physical obstruction of CSF flow in the ventricular system is usually the cause of the hydrocephalus. Hydrocephalus is a common companion of spina bifida (meningomyelocele).

Normal pressure hydrocephalus (NPH) can also occur due to a gradual blockage of the CSF drainage pathways in the brain. Although the ventricles enlarge, the pressure of the CSF remains within normal range. NPH is characterized by memory loss (dementia), gait disorder, urinary incontinence and a general slowing of activity.

In old age or persons with Alzheimer's disease, the entire brain may shrink and the CSF fills up the space created by the shrinkage. This is not due to hydrocephalus.

The diagnostic signs and symptoms of hydrocephalus depend upon the age of the person.

But when we get to comparing notes we find that there are may be 2 general types of hydrocephalus but when we each start telling our story they can all be very different. This is part of what makes this condition so difficult. Not a single one of us is the same. A lot of the times we even look like we don’t even have a condition all.