Christmas tree

Allergy meds and my headache

I have blogged before about how allergy medicine makes my headache so much worse. I was watching a doctor show where he was telling how allergy medicine especially decongestion medicine raises your blood pressure.

I'm not sure about other people with hydrocephalus but anything that increases my blood pressure increases my headache.

Happy Thanksgiving

Last year my family and I did not even have Thanksgiving dinner. I was in the hospital with stitches in my head and neck. So much has changed this year. I guess one of the big things and the reason for this blog is my hydrocephalus. The new non programmable shunt has not fixed all issues but my quality of life has improved so much.

I will always be thankful for my family. Without my mom and dad I don't know where I would be. My cousin/sister Steph and her daughter have been spending a bit more time with us. It was not planned to happen like this but I am so thankful to have them back spending time together.

For the second time in my life I have found a friend that I know is a truly good person and I'm happy we found each other once again. She was best friends to my best friend I ever could have had Brian. Michelle aka Supermom is truly a blessing.

I have connected with tons of hydro peeps and found many friends with our shunts in common. I am thankful for all the networks that keep us together and in contact. When I first started having complications I felt like I was the only person on earth with this condition. I felt all alone.

I just talked with my cousin and his son and have warm fuzzy feelings knowing I have family and support all the way on the other side of the United States.

I hope everyone can truly be thankful for your life this year. I know that I am.

Familiar people with or related to hydro

http://okhydrocephalussupport.wordpress.com/celebs-with-hydro/

Tina has given me an education on people we might know with hydrocephalus.

Quilting

For a while now I have wanted to take up Mamaw's hobby with quilting. So one year after my last surgery (today) I have decided to start on my journey.

I signed up for my first sewing class starting the last of January 2011. I have Mamaw's sewing machine she wanted me to have which I am hoping I can put it to good use. It is a hugh floor model.

The class does not start until next year but I'm signed up and ready to start. I miss Mamaw's quilts she always made for Christmas. I still have many of them.

I'm having Cake and Ice Cream

... for dinner!!!

German Chocolate and Vanilla ice cream!!!

my favorite!!!

My Christmas collections

2006 poodle Christmas tree...

Tree before decorating...

Mantel with Pepper and Ginger's stockings. I also still have Cricket's stocking I put out every year.

For years I have collected different Christmas things I love to decorate with. I also decorate my tree will collectibles that each have a memory of a person in my family or an event that happened. I usually put a date on things to remember. Not just for myself but for my family seeing that one day my things will be passed on to my family.

This is my peach carousel. My mom is always on the look out for unique carousels. These days they are difficult to find.

This is my fire place mantel. I need some updated pictures since I have added stockings and moved some things around.

Christmas dog warming his feet. He is sitting in the chair I sat in as a little girl. My mom also sat in and her grandmother. It was hand made by her grandmother's dad.

1993 Christmas bears. This is the years I graduated high school.

Christmas deer we got from Christmas place in Pigeon Forge.

a

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It's my Birthday

Singing: I'm gonna Party Like it's 1999!!!

It's my birthday!!! I'm one year old today!!!

Ok so you all know I'm not a year old. But one year ago today I was having surgery to rid my brain of the last of many programmable shunts that were a constant pain. I mean a litteral pain. I hurt like you can't believe. My vision was constantly a challenge and many days I had issues talking. Oh and my constant tremmors. They were horrible.

I am far from better but I am so much better than I was.

I had a non programmable shunt for nearly 20 years when refered to Duke the doctor there thought a programmable shunt was the answer to my problems. WRONG!!!

I still wonder if I had never had a programmable would I have gone down this road. Maybe... Maybe not... Either way I'm here and I am sure there is a reason for all the madiness.

I'm celebrating one year of no surgeries. No questioning how soon they can do surgery. No wondering it this will be the surgery that will give me some relief.

I know my life with hydrocephalus will have more surgeries. Because shunt fail and things happen. To stay alive and have a decent quality of life. Revisions are in my future. I am just so thankful to have the answers about my hydro I do now and constantly search for answers to my unanswered questions and issues.

Christmas tree still under construction

This is my first bow...

Steph and R came this weekend and helped me put up my Christmas tree. I have not decided on my topper yet. I have beautiful ribbon I usually put on it but I had it on and decided I did not like it.

I have been wanting to learn to make bows so I took advantage of taking the ribbon down and figured it would give me some time to think over my ribbon situation.

My tree has been a mauve color for several years but I decided to jazz it up a bit this year. I got some cute purple glitter garland type things after Christmas last year I had planned to use instead of bows on packages. So now they are giving my tree some glitz with glitter.

I still have to finish the tree with some kind of ribbon and a topper. So it is still under construction.

Causes of Hydrocephalus

My Hydrocephalus was caused by not getting the medicine to keep the swelling down after brain surgery to have a tumor removed. Mine is considered acquired hydrocephalus.

1 out of every 500 children born are born with hydrocephalus and /or a birth defect relating to hydrocephalus. It interests me the different causes of hydrocephalus. I'm wanting to know how many of my hydro friends came to have hydrocephalus. I am hoping for some interesting comments about hydro I have not thought about.

Waiting for some great blog comments...

My 1st Christmas

A tradition Stephanie and me started when her daughter was just little was putting up the Christmas tree together.

Ever since I was really little I have put up my Christmas right before Thanksgiving because of family that only comes by during the holidays would get to see the tree at least twice. I thought everyone got as super excited over lights and things as I did.

It took 2 days to get the tree up. But it is up and beautiful and I have my memory. I feel like it's my first Christmas. At least it is the first one in a long time that I'm going to be able to enjoy the holidays.

Right now it's 5 in the afternoon and I think I am going to bed. My fatigue level has hit bottom and I am aching all over. But I would not give up this weekend for anything.

We had Granny come up and eat lunch with us. Granny will be 81 this Thanksgiving. I can tell it was difficult for her walking over my area rug in my living room. Mamaw had trouble with those things when she got older.

This is what I get

For the past 2 weeks or so I have been super excited that I was going to be able to enjoy the holidays this year. My mom reminded me last year we did not even try to have a Thanksgiving dinner because the 24Th of November last year I had surgery.

So yesterday reality hit me very rudely. I was getting out some Christmas decorations and well I lost my balance and hit the floor hard. I have fallen quit a bit in the past 8 years so I try not to catch myself because that is usually when I hurt myself and I have a fear of breaking a wrist from the catch. Reality is I am going to fall.

I did not catch myself but hit on both knees and I did still sprain my wrist. How you ask? I landed on it. Nice I know. So It bruised on both knees my wrist and my rib cage. Because my arm was under me and the ribs hit my arm.

I laid down for a couple of hours with ice everywhere and a space heater blowing in my face because I was freezing.

I can move today though. I can feel it and I am reminded with every step of the fall.

I scared Pepper and Ginger. Pepper was laying on the couch and jumped up and came to me licking my wounds. This is a rare thing he only does when I am hurt. I don't like my pets to lick so have been taught not to. But this is his way of doctoring me and I can deal with it then.

My memory is shot

I have memory issues since the complications started. I have trouble remembering things from the past. But if someone starts to tell me key points I will remember.

The past few nights snuggling with Pepper he will put his front feet on my stomach and lay his head toward my head. If you know my Pepper he is very vocal. He is not the yappy type dog but he responds to you talking to him with growls and gestures so you know he understands what you are telling him.

So I would start to message his neck and I was getting little grumbles. I though maybe a sore spot he was telling me about. No, he would paw for my hand when I would stop.

Then I was rubbing him and told him " Pepper, I love you" and he responds with the grumble version "I love you" Then it hit... I had taught him to say "I love you" just the month before.

I feel so goofy. You know it is bad when you don't remember you dog's tricks. 11 years old and taught him to tell me he loves me. I'm writing this post so when I forget again.

I've got to get my video camera hooked up to my computer. I have been taking videos of Pepper with my camera and they are very grainy. But I want the videos because no one will ever be able to truly understand what my Pepper is and years to come was really like. I also want the memories for myself out of fear of forgetting the small details.

Exercise = Headache

I usually don't have an issue with my headache being worse after my swimming exercise. One reason is the humidity helps my headache. Plus it is very low impact.

On the treadmill I am barely breaking a sweat. I am walking at an increased pace but for just a short time. But it spikes my headache. I wonder if other hydro peeps have this issue.

Big time savings

I have had several couponing buddies searching and sending me coupons for Pepper's can food. Purina One had a great coupon buy one get one. I have currently saved over $70 with these coupons. I hope to find some more. Right now his food is on sale for 4 cans for $5...

Thanksgiving

I am preparing for one of my Thanksgiving traditions. The weekend before Thanksgiving My sister/cousin Stephanie and her daughter come and we put up my Christmas tree. I do this one because I love the tree but my tree has meaning and memories with every ornament.

As we take out each ornament from it's safe little box wrapped in tissue paper we discuss what each ornament represents and how it represents our family.

When R, Stephanie's daughter was little we started this ( not the special ornaments but the tree gathering) R gets to hear stories of her family that she never met and memories of family before she was born.

We usually have a lunch together depending on how I am feeling it could be Pizza or something more traditional. But we do it more to be thankful and to not forget all our past memories of family.

The first year R was just little and Stephanie was scared for R to be placing the ornaments. But the memory of her little hands placing our memories on the family tree is a memory I would never give up.

I have been unpacking carousels and rocking horses I have collected over the years ans on each I have a date to help to remember the year and place each of my treasures came from.

B12

A week or maybe 2 ago I started researching what friends did for chronic fatigue. I found treatment with several minerals and vitamins. I started with magnesium. I've not had any side effects from the magnesium. And I think it may have gave me a speck more energy. It was helping to drop my blood pressure the first few days but that has now disappeared.

Last night I started B12. I got in in tablet form but I am wondering now if I should look for a desolvable. I heard it gets into your blood stream faster and absorbs better. If anyone can help with advice on this one would be great.

The last few mornings I have woke up and had the thought of getting on the treadmill. Seven years ago I had this thought every morning. I started working out when I started high school. I was not able to play games because of my coordination issues and I know today it could also not have been good if I had been hit in or around the shunt.

Exercise always made me feel better and without it I have lost a lot of strength and muscle tone. I'm sure to get back to an exercise routine will help my fatigue also.

With waking up with a workout on my mind is a big deal. I have never been a morning person but I have the last few years really hated mornings. I wake up hurting because I have slept off all my pain medicine. My head is hurting and I ache all over. Often have a good bit of back pain also.

I'm still waking up in pain and achy I grab for a cracker or a fiber pop tart. Just something to eat with pain medicine to keep it from hurting my stomach. I have learned to tolerate a lot of the pain but the fatigue on top makes things so much worse.

All my pain management doctors have always thought to help the pain and it would decrease the fatigue. Well no one can take the pain away. Some medicine can decrease the pain but I still have it. I think having the faulty shunt for 14 months and so so many surgeries trying to fix the problem has just caused me the constant pain. You can't just have surgery after surgery every 3 months and not have damage.

I am thankful that I did not have worse damage than I do. My memory has suffered. My coordination is worse and my balance went from barely noticeable to I need a cane. Not all the time but it keeps from very embarrassing falls in front of people. I mostly have the falls when I don't use the cane. But I still have my moments.

With the vitamins I'm trying I hope to get back to exercising and with building my muscles back I think will help my balance or at least maybe it will help me to catch myself quicker.

Day 1 of the weight challenge

So guess what happens when you are basically bed ridden for 5 of 7 years. You don't burn calories!!! Even though I did not eat much. What I did eat stored.

Then the fatigue does not help. When I feel super tired. I feel like I'm having a low sugar attack. So I eat.

Honestly not knowing if I would be having another surgery a month after the last I did not care if I eat. I felt like snot anyway so I ate what I wanted.

My energy is doing a bit better. I hesitate when I say that. I have gone the longest between revisions this time but I still wait for the ball to drop.

I know the rest of my life is going to be surgeries. That is the reality of my condition and the key to stay alive and not a vegetable.

So while I am having a break from the major fatigue I'm going to try to get myself a bit more active and see what happens with the ruffles I have found in the past few years.

I don't think I will ever be able to be active like I use to. I seem to get tremors when I start getting to doing much more than a brisk walk.

I often when I go swim I shake and am very weak. It last for the rest of the evening but I do recover by the next morning. Which this is an improvement from a year ago when an hour doing low impact water exercise I would be in bed and sleep most of the next day and would be lucky to make it back in the day after that. A lot of times I would practice my floating on the 2 swim more than exercise.

I'm crossing my fingers that I can start getting on the treadmill a morning or 2. This morning was day one.

I would try the treadmill from time to time but with the water exercise 2 times or 3 if it was not such a bad week. The water was all I could handle.

This time last year

I had forgot how really bad things were. My mom reminded me as I am going through boxes of Christmas things I have not had out in years. And I am remembering them but honestly I had forgot about so much.

I have felt so bad for so long and last year was the worst I think. Christmas is my favorite time of year. I love doing for others and I love decorating. The small tree that was up last year it took me until Easter to get it packed up. I just did not have the energy to take it off the stand and place it back in the box.

Just trips to the bathroom winded me. And I constantly had dizzy spells and head rushes. I had no quality of life. I felt hopeless and depressed because I had been to doctor after doctor and had 10 surgeries. Each one suppose to hopefully just give me some relief.

I went from working 40 plus hours a week and going out with friends 2 or 3 days a week to thinking I'm going to have to move back in with Momma and Daddy and they are going to have to care for me.

I had a isotope study a year ago and the surgeon told me the shunt was working fine. But I could not understand why I was so sick. My mom ask if we could try a non programmable shunt since all I have had is problems for 7 years with the programmable. He agreed to try but really thought I needed the programmable.

For many months after that last surgery I have wondered how much it was going to help. It was a major relief not to have the head rushes. It was a dizzy feeling that would follow with shooting pain.

I'm afraid I wont be like I once was but I am so thankful to not be in the same place that I was a year ago.

Experience Project

I was reading other hydro peeps blogs last night and came across a new hydrocephalus support group. It actually has many other groups besides hydrocephalus but this is what I am interested in.

It is called Experience Project. I am still learning the ins and outs of the page but I am totally enjoying a new place to meet hydro peeps.

Pepper knows best

I just designed these super cool cards now I can't find the coupon code for the free cards!!!!

Can I say? AHHHHHH!!!!

How do I fight the fatigue?

Yesterday Tonya came and cleaned house. She was here 4 or more hours. I did a few things around besides barking out my orders.

I was so tired I could not go to sleep. You know that restless ache you have from not being able to find the right spot in your bed.

When I did sleep it was not for long. I woke up at 5am... Talked myself out of going to physical therapy (swimming exercise) because I hurt all over like I had been the one doing the cleaning.

By 10am my lights were out again and I did not move until after 3pm... I feel terrible. I've got some other vitamins I'm going to try to see if anything helps.

Grey's

Oh my goodness!!! Grey's Anatomy has a man with normal pressure hydrocephalus!!!

Of all things I could do

Let me put it this way you can't tell the shunt from the bump where I bounced off a mirror with my head...

I eat

cause fat chicks don't get kidnapped...

I've got nothing

My mind is totally blank. Not really but I've got shopping and e-bay and Christmas on my mind. So I am just hearing jingle bells constantly. It does drown out the ringing...lol

My dream

It would have been nice to wake up with warm fuzzy feeling after a really peaceful dream. Well I got my warm fuzzy feeling but it was more literal than you think. I dreamed about socks. I mean really... Why dream about socks? I don't think they were even mine. At least none I have ever had. Red and green plaid. I woke up thinking"What the ...?"

It was a beautiful day...

I got up with the same headache I've been having but hit it hard with medicine this morning. I actually ended up having a decent day.

I've had Christmas on my mind a lot lately. I like to get all the presents and all the stressing things out of the way so that I can enjoy the season. I love the lights and snow. And I love getting presents but the budget holds me back.

Last year I was just feeling terrible and did not put up my big tree and it was just not the same. I've got some friends that help me clean and they are going to help me with my tree this year.

Last year I bought a 4 foot fiber optic just to have a tree and not to have to decorate it because I honestly felt horrible. The tree did not get taken down until after Easter.

February I called it the "Valentine tree" and then it was the "easter tree." Hoping to not relive this moment.

November 24th will be one year since my last surgery. It feels strange to have hair again...

Kinda sad

My headache is back and my blood pressure is back. Depressing... I was so exited thinking I would not have to try another blood pressure medicine.

Harris Tetter triple coupons

Harris Teeter is having triple coupons 11/4 through 11/10... Check there web site for tripling details.

H1N1

Last week we had planned to take a day trip to Pigeon Forge but it was canceled because of a car rental place that could not call us to let us know our van was not there. But maybe everything happens for a reason.

I decided to do some returns in town and as I was going into town I saw some fliers out at the road at Kerr Drug store. H1N1 available now!!! Oh my Goodness got to do a U-turn.

I have tried to get it several times from the Madison county health department each time just missing it.

The red lights to get back were set to delayed I think it took 15 minutes to get back to the drug store. Went in and found out they only had a few doses and were only doing the clinic a few hours.

I had the regular flu shot several weeks ago. And now to have the H1N1 is a great relief. I know I'm not able to stand in line for up to 4 hours to get the shot and allergies or a cold make me hurt so much worse than I ever use to. I know it must be related to the complications from my hydro. Because the aches and pains are always worse in my back and really do a number on my headache.

Magnesium is helping my headache

I have seen a positive result besides my blood pressure since starting the magnesium. I have been having really od bouts of my headache feeling weird. I question if it is hurting different or not at all.

Yesterday was a good test. I went through the mountains of Tennessee toward Erwin. This drive usually has me miserable hurting. I felt pressure and pain at the top of the mountain but I was still able to enjoy the drive.

My blood pressure continues to be good. This morning it was 131/74. I hope so bad I can keep it down and not have to take medicine for it. The meds just make me feel like I have the worst flu and kind of similar to the aches when I totalled my Camero.