Update

Hi everyone, This week was pretty good. The drive to work is more or less stress free. Yes I am driving myself to work again. Maurice had to drive me to work only one day this week because I was feeling off and I thought to myself better safe than sorry. The drive home is a bit more challenging as it is a dark drive home and the car lights bother me some. I get anxiety driving at night, but the anxiety is becoming less and less as I drive more and more at night.

I only had one bad night this week. I can definitely tell that I am improving more and more every week. Although not every night, I still wake up in the middle of the night a couple times a week with anxiety and I have to talk my anxiety down. God always helps me through it.

I can actually clean the house some. I still haven't conquered the dreaded grocery store. I dont like to go out alone ever, not yet anyway. Believe you me, I will go out alone again.

OK, adios

Getting There

Well I only had one bad night this week and that was Thursday. I think it is anxiety that takes me down. Since I had a bad experience driving home from work that one time I think it has given me great anxiety when I know I have to drive home. I don't know. Enough with the negative. I had a great Friday and I am having a great Saturday. I feel completely normal today. I know not to over do it and take it easy. I do a little and then stop. I know what happens when I over do it. So all is well and I am getting some much welcomed peace of mind. I will go out tonight with the family to celebrate my sister Aimee's birthday. I will smile and laugh tonight and I will be very thankful for that.

Loss of Control

I am fighting depression. I will win, there is no doubt of that in my mind. However, depression has entered and is lying on the couch with me eating. It is looking in the mirror and crying with me.

How I used to cope with life is by working out and doing cardio. I would go to the gym 5 days a week and feel great doing it. It made me so happy. It made me love life. It was my "thing". Another thing I used to love doing was taking great care of my dog. I used to love taking her for long walks and giving her lots of attention. Yet another thing I loved was my hair. It was my security blanket and that too is gone. Not to mention that my hair is going to be shaved for the 3rd time for my next surgery. Yes it will grow back but all these things have been simultaneously taken from me. I have 6 snakes. They too are being neglected. I am not able to take care of my pets properly because I have a limited amount of energy and also the depression is not helping.

I feel so insecure sometimes. I want to go to the mall today which is about 15 minutes from here but I am a bit apprehensive about it. I dont know. I spend my weekends in my house and thats not good. Sometimes I am obligated because I am not well enough to go out but right now I am feeling fine. That could change at any minute. You never know when those weird feelings are going to show their ugly face and that in itself is nerve wrecking.

Well I have a lot of issues to sort out. I think it is because so much is unresolved in my life. It is the uncertainty of the outcome of all this. Will my MRI come out clear at the end of February or will there still be swelling? What will be done if there is swelling? Will I have to go back on those incapcitating steroids? Will I have my surgery to cover the hole in my head in March? That is a HUGE weight to carry around. A HUGE WEIGHT. That is why I am falling apart and gaining weight and using food for comfort since everything else has been taken away which is compounding my problems.

Good days Bad days

Well just when I started to complain, God threw in a couple of great days for me. I am so thankful for that. These good days renewed my faith and infused me with confidence. This new reality is just that, "new" to me. I have to learn to navigate and adapt. For 33 years I could do what I want when I wanted to without having to worry about if I was going to have a problem if I went to the mall, if there would be a place for me to sit down, if something terrible is going to happen. I notice that I have an issue with anxiety now. I suspect this will improve as I learn my limits. I know I will gain more endurance as time goes on but learning and testing myself is plain scary.

T O'ed

Did I mentioned how pissed off I am? I am so angry this happened to me. I am tired of the "good days" and the "bad days". I am tired of being on this see-saw. I am tired of being disabled. I am tired of being scared to death. I am tired of being uncertain.

Dam it all! I better get some good news from these docs soon. I swear if my next MRI doesn't come out normal I don't know what I am going to do. I want this hole covered in my head once and for all! I feel so vulnerable with this freakin' hole in my head. One punch to the head and i'm a gonner.

Well I created this blog to vent. I'm going to work today even though it is a "bad" day. Not to mention I had a bad night. I am dizzy once again and my limbs just dont feel right. I cant explain it because it is so difficult to describe. There is no describing it to ANYONE because no one understands and no one can relate.

All right, well here I go, i'm going to work, wish me luck. Wish me courage. Wish me strength. My life sucks.

Another Work Week Complete!

Well I did it! I worked everyday this week from 9 to 5:30 pm no matter what! Monday was hell, Tuesday was hell, Wednesday was hell, and Thursday and Friday were cake! :-)

It feels so good to be able to walk in a straight line again! I tell ya, the things we take for granted.

I am still dizzy, but a very tolerable dizzy. It has been about 120 hours and these steroids are still in my system. I am guessing that the effects of these steroids will be completely gone and out of my system by Monday. That is my guess anyway.

I am so happy that I was able to persevere through the week and earn my paycheck! Thanks to Maurice and Aimee for driving me to and from work.

Steroids and Dizziness

My last day of steroids was Sunday. I was still feeling the awful effects from them yesterday while at work. It was rough going at work. I could barely walk a straight line. Dizzy as heck all day and hoping not to fall.

Waking up today I am feeling a lot less dizzy and a lot more confident.

Steroids can take up to 72 hours from your last dose to leave your system. Steroids are just nasty.

A word to the wise, "JUST SAY NO!"

Last Day of Steroids

Well I took my last steroid (2mg) pill today. Little by little I am getting my balance back and losing all the other terrible side effects. The side effects are hanging around but I am sure will dissipate gradually. Normal sleep patterns shall return, normal appetite, acne will clear, etc.

HAPPY NEW YEAR 2010!

Adios 2009! Here's to a great 2010 and some much needed closure. I just know it is going to be a great 2010!

Happy New Year to you all. May 2010 bring you Peace of Mind and much happiness.

Still Working albeit Dizzy

Love you all for your support. Somehow by the grace of God and all your well wishes, my spirits are lifted and I am making it. I have worked my way down from around 15 mg of steroids a day down to 6mg. Soon it will be 5mg and so on and so forth. I go to work dizzy as a dodo bird. I am determined to keep on working no matter what. It is hard, but I am strong. My co-workers are very supportive. I feel such a sense of strength and accomplishment going to work and all no matter what. I CAN DO THIS!

Thanks everyone! Your support means the world to me.

Marked Improvement

I am happy to say that I am feeling better today. Not 100%, but not AWFUL like yesterday. I can function A LOT BETTER than yesterday. I mean I was good for NUTHIN' yesterday.

I really think it is these Steroids that I am on that lower my seizure threshold. Steroids simply play havoc on any body especially one adjusting to anti-convulsants and a hole in their skull. I only have about 5 more days left on these steroids. I am tapering off of them slowly. The more I taper off of them the better I feel.

Seeing my family for X-mas did wonders and miracles for me yesterday. My spirits were risen so high! I love them forever and am so thankful to them. I am very lucky. I had a lovely Christmas!

Hi Dad!

I always knew you were there you little Bugger!

I never appreciated my life. I took all the wonderful things for granted. I complained. I didn't have a good reason to complain but I did anyway. I used to ask God to take my life away. I hated life. I used to say I didn't see what was the big deal about life. I did say those things. I could NEVER understand why I felt that way, or why I couldn't possibly see how beautiful life was like most people. I was very frustrated by this and I suffered a lot because of it and as a result I used to wish for death, I would ask God to take my life. But in my defense I did have a big tumor located smack dab in the center of my emotional/personality part of the brain. Therefore I believe I should receive some mercy for that right? Heck, I clearly wasn't in my right mind. I always knew you were there you little Bugger! Holding me back and causing these strange and miserable conditions in my mind.

God is a gracious God and has blessed me with clear vision now. I have such a lovely perspective of life now that would have never been revealed to me if it weren't for Gods mercy and kindness. So for that I am so incredibly thankful. For this vision, for this realization of the precious gift of life. Thank you God for showing me this infinite and beautiful gift that is life! I feel alive for the first time in my life.

Feeling Pretty Weird Today - Getting Worse

Well people I dont know what to tell you. I dont know what is going on but since around the time I had my first Grand Mal Seizure 12/17/09 I just cant function right. Here's the problems:

- I always want to fall to the right. My head feels like it is perpetually falling to the right.
- The right side of my face and body are numb, awkward and clumsy.
- I cant seem to make it through the entire work day. I simply cant. I become mentally and physically fatigued so much that I cant even think or respond. The other day I had to lay down on the couch at work and a co-worker of mine gladly drove me home.
- I cant do much of anything without getting really shakey on my right side. Its like my right side struggles so and just needs to shut down.
- My right side of my head feels like it weighs 100 pounds and it is a struggle to keep it up.
- I am utterly weak and uncoordinated. Getting dressed and doing everyday tasks has become quite the chore. I am a high fall risk. Washing my hair is a monumental task.
- I can barely do my nails. It is quite the laborious task now.
- Everything is hard to do.

What do I think is going on:
- Well they started me on steroids for the swelling on my brain where my tumor was on 12/19/09 and it could be those. I still have a couple more days left on those.
- It could be my body adjusting to my new antiseizure regimen. I was taking for quite some time Keppra XR 1250mg and started Lamictal XR mid October and am still in the process of working up to 200 mg/day. Right now I am at 175mg of Lamictal/day. Next tuesday I will reach the max dose of 200 mg/day and stay there for quite some time until I see my epilepsy docs at Thomas Jefferson in Philadelphia in February or sooner.

This is the most debilitated I have been since my early recovery days. I made some wonderful progress these past months but have some how regressed. I want to point fingers, but that wont do a thing. Maybe I just have to be patient. I was able to work full time again and was doing quite well these past months. But now I dont know If I can. I am hoping that this grand mal seizure is just something I have to recover from. Anything could be going on in that head of mine.

I am at God's mercy and gladly so. He will do as he sees fit. Everything is happening for a reason and I know exactly why this is happening to me. I'm OK with that. I am just going to ride it out the best and most sane way I can.

I can control nothing. I see that now. I have NO CONTROL over the future or this situation. NONE.

MY MY MY, LOOK AT HOW FAR WE FALL!

Merry Christmas

I want to say Merry Christmas to everyone that reads this blog. Your attention and support is a GREAT comfort. May your holidays be very special. I am going to keep on fighting regardless of how bad it gets. Your support will make the road that much more comforting for me. Thanks to all my friends and family during this most challenging time in my life.

Surgery Delay

For two days I have been very dizzy. My head feels like it wants to fall down. I am hobbling around. I cannot drive anymore and have to depend on rides to and from work. I have become very limited.

I went to see my neurosurgeon. I was supposed to get my plate placed in my head in January but now because the swelling has not subsided it has to be put off until March perhaps. I will get another MRI at the end of February and if the swelling has gone down then the plate will be placed in March.

Anxiety takes over me. I am not at all sure about what is going on. I do not like this new dizziness that I am experiencing. My license has been taken away, I am on steroids for the swelling, I am on two different anti-seizure drugs and emotionally comprimised for obvious reasons. It has all been so much to take since June. I dont know, but my right foot/calf seems to be off. Maybe I am just beyond paranoid.

My spirit is starting to wane. I begin to wonder if I am going to make it. What will my future be? Will I be around much longer? Maurice, the love of my life, he is the best thing that has ever happened to me. I cherish every kiss and moment we are blessed with and remain to share. I cherish my beloved Sisters Aimee and Bizzy. I cherish my father and my little nephew Andrew. I hope to see him grow up, I hope to be around to help my family like they have helped me.

I pray for the strength to make it through this. I need strength. I need to believe. I am trying to hold on to my job for as long as I can. It is so hard for me to get through the day lately. I cant walk properly. I am dizzy.

I worry about my docs in Philadelphia (Thomas Jefferson Hospital) not communicating with my Neurosurgeon (Dr. Sanford Fineman) in Union, NJ. They dont communicate at all. I am left to delegate all but I can barely delegate my own life. I am tired and worn, I am 34! I am scared to death.

I dont want to dissapear forever. I NEVER want to lose my true love Maurice, EVER!

I cant wait for this to be over. Sometimes I feel that it is going to break me. I dont know how to process this.

I dont know.

The only thing I do know is that I LOVE LIFE AND I AM WILLING TO FIGHT!