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!

Letter To Anyone

I am so angry this happened to me. How could you give me such a wonderful, free and independent life only now to be so limited and jeopardized. My life has been one tumultuous piece of crap after the next. I am really really sad and these mind altering anti-seizure drugs i'm sure are some of the cause besides knowing that I have one more surgery to go. I'm just sayin to all you people out there complaining about having to work too much, or being too exhausted to take care of your children or family, or even your own life, well try doing it while your health is comprimised and in danger. You give it a shot when your licensed has been revoked, try going to work then, holding on to your health insurance and paying the bills. Try not worrying yourself to insanity.

Be thankful for your health and never take life for granted because you never know what is going to happen to you or your loved ones. Look at me now, I am in some serious shit. I am fighting for my life and I have no idea what my life is going to become. My relationship is strained and my family suffers along with me. So much anger and I dont know what to do with it. So much stress and I cant handle it. So much anxiety and I cant deal with it. The once joyous life I had is gone.

There I said it. My pity party is done and over for now and I can move on.

Seizures and Hospital Visits

Hi Everybody, Sorry so long with the update but I have been in and out of the hospital. I went to Thomas Jefferson University Hospital in Philadelphia for an Epilepsy study. There they put me in a video monitored room for 5 days. I was on 1250mg of Keppra XR and 100mg of Lamictal for some time and I was still getting numbness and tingling on my right side. So as soon as I was all checked in the team of epilepsy docs decided to drop my Keppra from 1250mg/day to 750mg/day. Well I was fine for 5 days. I had all these electrodes pratically crazy glued to my head for 5 days of EEG monitoring. Everytime I would get a numbness and tingling on my right side it did not even register on the EEG as seizure activity. So for 5 days nothing happened. The docs choked it up to that I was having such minor seizure activity that it would not even register on the EEG therefore I was not a risk for getting tonic clonic seizures (grand mal seizures). The last day they dropped my Keppra XR from 750mg to nothing and decided to increase my Lamictal XR from 100mg/day to 200mg/day. I saw the logic however I expressed my concern by telling them that I was very sensitive to medication and that I would prefer to be weaned off of the Keppra XR slowly. Well that request fell on deaf ears.

So I was discharged on Tuesday. Went to work the next day. Felt fine all morning. Then in the afternoon I got this really sharp pain where my tumor was. It only lasted for seconds but it was exruciating. Next came the shakes. They were absolutely terrible and then I couldn't walk right. Well someone drove me home from work that night. I wasnt about to get behind the wheel. So finally it is bed time and I go to sleep. Well at 4 in the morning I open my eyes to my fiancé's terrified face over me saying, "Babe! You just had a major seizure". All I could do is stare at him. I was so bewildered. He called 911. He said I was Karate kicking, foaming at the mouth, jerking around and my eyes rolled back in my head and it was all only for a minute at most. I remember nothing of the actual seizure. I became extremely nauseous and pale. My blood pressure dropped to some ungodly number like 70 over 40 or something like that. I was pale like a ghost. So I was rushed to the local hospital in an Ambulance. When I got to the hospital they gave me some Keppra and I started to feel better. So I was discharged that same day from the hospital.

So I get home and am resting on the couch. The phone rings. It's my epilepsy doc at Thomas Jefferson Hospital and he says that they got the results of the MRI I had on the last day that I was there. He said there was some swelling where the tumor was removed. He was very concerned and wanted me to come back and check myself in the ER for an MRV. An MRV is like an MRI except it is a lot shorter duration and it looks at the veins in the brain. Anyway it turned out that my MRV turned out fine. Some neurosurgeons looked at the MRI and said that it was fine and not uncommon for people that have had tumors removed. So they told me to go back on the Keppra XR 1250mg/day and continue the Lamictal 200mg/day. I was discharged last night. By the way, TJHospital in Philadelphia is over an hour away from my house in NJ.

Anyway, I have an appointment with my neurosurgeon on Tuesday to schedule my 3rd surgery in January to get the plate (get my soft spot covered) put back in my skull. It is a plastic plate they are going to put. I cant believe this is what my life has become. I am terrified. I never want to experience another tonic clonic again, especially since my blood pressure drops so low.

But I feel that God is looking out for me because I could have had a tonic clonic seizure while driving or even while working or anywhere; but instead I had it in the safety of my bed while sleeping. Same with they very 1st episode that started it all, that prompted the brain surgery when the right side of my body stopped working for me, I could have been anywhere but I was in my bedroom both times! God is Good!

Sometimes I am terrified that I am not going to make it. But I am a fighter, and life is worth fighting for. I will get through this with your, my families and Gods support.

Thanks for listening.