My fatigue has changed...

If you remember not long ago I started researching vitamin and minerals for chronic fatigue. I'm not sure I have chronic fatigue but I have a lot of the same systems caused from my hydro. I Am happy to say things have improved. I am sure adjusting to the right type of shunt and finally being stable with no surgeries since November 2008 has helped also. But I can actually do somethings again.

Not less than a year ago I was laying around most of the day from the bed to the couch. Sitting up long would make my headache so much worse. My connection to the outside world was through my computer and phone calls. Phone calls were very limited because so many of the friends I had before I got sick did not understand my condition or rather I just was not as much fun anymore since I could not go out at the drop of a hat and could not tell if I would have hair this week or not.

The combination of vitamins and new shunt I think have give me a new out look. I am able to enjoy doing things with my friends again. But my fatigue does catch up with me still.

Yesterday I went to the YWCA to a low impact water aerobics class and I walked on the treadmill a few minutes. I fell asleep at 8:00pm last night. It is my body's way of telling me I'm not back to my normal yet.

If it was just 6 months earlier I would not be able to spend time with Jake. And to be honest his company has done my spirits a lot of good. It means a lot to have someone you can see face to face you can relate to.

I was so excited yesterday

I have posted a few post on my new friend J. Who is Jake and I found out yesterday from trying to be discreet until I knew for sure he did not mind that I was blogging about him I have mean friends from school reading my blog post. This is such a special thing to me because with them asking about Jake I know they are reading and paying attention and learning about my condition. This is the reason I blog to teach. Not to keep everyone updated on my every pain. I want to bring awareness to this invisible condition. I went to school with all my friend and including myself we all did not know I had this condition. I looked like everyone else.

I had the shunt the whole time but was told in 1983 it did not work. But it was working and I had active hydro the whole time I was in school. So for my friends from school to be reading really means a lot to me.

For my friends that don't remember who my friend Brian, I am talking about Brian Sampson. Little Brian, he died in 1996. Brian was the reason Michelle and I became friends also.

Michelle and I were both best friends with Brian. Brian always wanted us to be friends but we were happy being his friend but knew everything about each other through him. Since his death we have become great friends and she is a probably the best friend I have ever had.

It means so much that I can be honest for one time in my life about my illness and not be ashamed that I am different. I always tried to hide my disability but I am so happy i don't have to. Thank you to everyone that is reading.

Headache

I thought I would give a headache update. Topamax is helping alot. I'm not having to take as many pain meds. It is also helping my aches and hurting. I am assuming now the pain must be nerve pain because that is hoe Topamax works.

With not having as much pain I am having less fatigue so I am able top exercise a bit more. I am so determined to get this weight off. I am really not happy with being this size. But I knew I could not do anything until I could do something about my fatigue which made me depressed, which just made me feel so much worse about myself.

Getting back on track

I know, I know, I have been slacking in the blog department. But honestly I have been wrapped up in my new friend,J. I'm totally being honest here. Because it has done my heart and soul so much good that I think for a short time I would forget my own pain. It is so nice to have someone around again that I can relate to. I never thought I would have that again after Brian died in 1996.

My Friend Michelle has been a true blessing because she is the caring and nurturing friend I needed for so long. She has that motherly unconditional love I needed from a friend. We are also friends because of Brian.

We were both his friend before his death and started talking after his death. But it is like we have always known each other because Brian will tell me everything on her, and her everything on me.

I have been trying to forget my hydro a little bit lately and just really enjoy the moment. But as we know everything does not always go as planned. J had a stroke in 2008 and nearly had to have a shunt but slipt by with out lucky guy. But we still have a lot of the same systems from pressure issues.

Fatigue got the best of me yesterday. I spent the day hanging out with him and family nothing big sitting around talking. I came home and was knocked out by 8pm when he went on to a car show. I may be me still recovering from 11 surgeries in the past 8 years. My energy is doing better but it still reminds me I got to watch what I do...

Power of Prayer

Is it possible to pray for someone and not know that is who you are praying for? To ask God for just one person to understand? Someone to talk to? Someone to relate to? Someone to understand your pain and limitations?

As we all know sometimes God answers our prayers with answers we are not pleased with but are for a reason. God has answered my prayer. I can't tell you the lonely times I have had laying in hospital beds, looking at doctors and hearing dreadful news.

I for so long could not understand why I could not meet someone near me with hydro. I would stay up late at night going through different support boards thinking I can't be the only person in the world with this but it sure felt like it.

So I have meet someone who does not have hydro but we can relate on many levels. It has done my heart good to have J in my life. I feel lucky to know him.

I have a dear friend that enter heaven near Christmas of 1996 it has run through my mind if he whispered in God's ear that I really needed him in my life.

Sunday morning! Who's rushing out to get a Sunday morning paper?

Checking out the latest coupons in the Sunday paper. We usually rush out early to get a copy to check out the coupons. Then if they are real good we can buy multiple copies.

There are helpful site these days that nearly match up your coupons with your store and sale. One of my favorite sites I check several times a week is Southern Savers If I don't go to any other site this week I will go to Southern Savers.

They give you the how tos on it all. If you have never couponed before you can learn here. Just click the tab at the top of the header Learn to Coupon.

You can also find several sales with printable coupons for your convenience. This is one of my coupon secrets. I'm all for making things easy these days.

Whenever you realize you DON'T have to settle for the just anything in life THEN you will begin to really live!!

Still working

I am excited to say that last week I did not try real hard to loose any weight but still lost 3 pounds. I just did not have my heart in it. Honestly I have had my new friend J taking up a lot of my time. We have been getting to know each other and learning a lot about our conditions.

I have got to get back on track with myself and keep up with everything. It has just been really important to me to get to know J and about what has happened to him. But it is still very important that I keep up my blog. I don't want everyone to think I have stopped blogging on hydrocephalus. It is still my life but like the title of my blog it is not me. I want to be able to live life without having hydro run my life all the time.

Topamax dose up to 100 mg

Last night I decided to up my dose of Topamax to 100 mg. I have adjusted to the 75 mg. and doing good. I am looking forward to the medicine doing what it is suppose to do. Today it is raining so I have a nice weather Doppler headache but I can say it is not as bad as in the past. So I do think that has to do with the topamax.

This time last year

Time flies I was just reminded about how just months ago I was legally blind from the build up of pressure from a faulty shunt. It took a new shunt and several months for my brain to heal from the injury. It was scary not being able to focus on anything. You could see but it was like the worst dream vision ever. I remember I was so ill when I was told I was legally blind in both eyes. And I could not understand why. From the pressure? Why don't they fix it? Why did Duke keep telling me I would have to live with it?

I am so thankful my parents kept fighting and did not take that as the final word. I hurt so much I spent 90% of my day in the fetal position in bed just doing the "have to s" have to go to the bath room, have to feed Pepper...

The things I have learned since 2002 I know to look out for myself but I hope to keep it from happening to someone else.

Wanting to pay it forward

This isn't exactly related to hydro. But if not for what I have been through I may not be able to sympathize an be there as I should I have always been a compassionate person but I am more of a can I help to fix it person these days.

So this interesting thing happened. I was suppose to have plans with a male type friend Monday night. I ended up getting mad when he thought he could wait to call me at 8:00. Long story short it was probably meant to be. I got a return email from a friend from school telling me about himself and his brother.

Brother in 2008 had a bad ski accident and has similar issues I can relate to but a lot I am still learning about. I'll call him J. He seems like such a strong person and it has not been long since his accident. I remember when I first started having complications from my hydro before I knew what it was I felt like the lonest person in the world. I have to admit to I pushed people away because I did not want to be seen with my scars and half my hair shaved off. I felt less of a woman.

I am stronger now but it is 8 years later. I don't know what else I can help J with but I hope my friendship will help. I think back then it would have helped mine. I don't care how hard you try it's hard not to feel sorry for yourself. I never ask why me. I know it is suppose to be me. But I remember really needing a break.

Maybe this is the reason Topamax is working for me this time to give me a chance to be there for someone else. Even if all I can do is be support. I feel like I was meant to connect with J.

Testing... Testing...

For the past few year I have had someone help me clean my house because bending over bothers my headache and make my shakes worse. But I totally had no choice here. I had friends coming over tonight and been trying since last week to get someone to help me and it kept snowing and people would have stomach bugs.

But I have been working a little bit along worried it was going to really mess with me but going to deal either way because I had to do it.

Result My house looks great. My headache is no worse and neither are my tremors. I am so excited. Am I really going to get my life back this time? I am so ready to come out of hiding.

I have been working on loosing this weight I gained the past few years since I have been sick. A lot dropped all at once. I wish it would keep it up at that pace but I am Happy with how ever it will happen. I just want to get back to the normal I was before all this craziness.