Thursday, December 31, 2009

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.

Tuesday, December 29, 2009

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.

Saturday, December 26, 2009

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!

Friday, December 25, 2009

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!

Thursday, December 24, 2009

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.

Tuesday, December 22, 2009

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!

Sunday, December 20, 2009

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.

Saturday, December 19, 2009

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.

Saturday, November 7, 2009

Had a Long Run

Well it was nice to experience normalcy while it lasted. I was seizure free for a week plus. Then the seizures started last night (Friday night) at 7 pm till 10 pm. Then again at 2 am and they are still going to this very second (4pm). The seizures consist of the usual numbness on my right side, dizziness and lethargy.

It has been my experience that my incision becomes infected. I am worried about it being infected again. It is NOT SHOWING ANY SIGNS OF BEING INFECTED. But I just have bad memories of thick pus gushing out of my infected incision. Whenever I get seizures I automatically attribute it to problems affecting my brain, like my head is all full of puss from infection therefore making my limbs go numb. I cant help it. Just another part of life that I have to face. I suspect I am paranoid at this point and trust God that everything is just fine.

I intended to go to the gym today to do a light workout. How disappointed I was when I was not able to. I was feeling so great for a week plus. For seizures to surface again is a real let down. I realize that my recovery is going to take some time and not be as fast as I would like it to be.

I ask God for Patience and Faith.

Thursday, October 29, 2009

Shortness of Breath Resurfaces

Last night around 4am I got up to eat something. When I returned to bed I had shortness of breath. I took an Aciphex and that helped. Well the shortness of breath returned today at around 11am. This sucks. I have never had asthma in my life however both my sisters and mother have/had asthma. However they describe a tightness in the throat when they get asthma. I feel a restriction in my diaphragm and chest.

I'm so sick and tired of being scared and sick. Eversince this brain surgery it has been one terrifying thing after the next. I miss my old life. I sure as heck appreciate this one, but without all the scary things. Like worrying about my breath, or seizures or being able to work, or my next surgery, or my anxiety.

Ahhhh life. What a turn you have taken. You are really testing me and showing me how strong I really am.....I never knew it.

My 2nd full day at work

Well my 2nd day at work was MUCH better than my first. I had no seizure activity what-so-evah! I just paced myself all day and did a little futzing about with my siezure meds and that seemed to do the trick. Here's hoping for more good days than bad.

Wednesday, October 28, 2009

My 1st full day at work

Tuesday, 10-27-09
It was my first full day at work. I worked from 9-5:30pm. It started off well enough but then at around 2:00 pm, the seizures started. I felt just awful, dizzy, tired, lethargic and my nose went numb. I wanted to cry but I didn't. I just put my head down on my desk when I needed. I prayed to God to watch over me and not let me pass out and to let me make it home safe while driving. Thankfully I made it through the day and safely home. It was just a trying day for me. Hopefully today will be a good day.

Monday, October 26, 2009

Today Is a Good Day

I am having a much better day than yesterday. Just takin' it easy today. No seizures so far.

Terrible Day

Sunday, 10/25/09 - Well I have been feeling pretty good these past few weeks, just dealing with minor seizure issues. I went back to work and all was well. Well yesterday morning I decided to add some walking lunges to my exercise routine. That did it, I pushed myself to far. By the 3rd set I felt an electric charge in my brain. That was 11am and would be the start of non-stop seizure activity until 9pm that night. It was one of the worst days i've had since my early days of recovery. I guess I am in essence still in the early stages of recovery. Sometimes I forget that. I just want to get back to my old life. I used to be able to do so much. So anyway yesterday sucked royally. Did a lot of praying yesterday. Had a lot of anxiety and fear. Sometimes I just get so angry. I am mad that this happened to me. But I know that those are all just normal feelings.

Sunday, October 18, 2009

Doing Okay

Still having a bit of seizure activity. By "seizure activity" I mean that I will get really sleepy, it is really hard for me to focus and anything on the right side of my body (from a foot to a leg to an arm to my face or any combination thereof) gets a numb sensation. This usually lasts for a couple hours and goes away just as quickly as it reared its annoying face. I guess I haven't found the right dose of anti-seizure medication yet. I'm getting used to these feelings. I used to get really stressed out when it happened, I still do, but not terrified like before.

Note to self: You haven't gotten good quality rest this past week. Poor sleep contributes to a lower seizure threshold. Also you had some candy, it has been your experience in the past that sugar also lowers your seizure threshold.

Friday, October 16, 2009

First Day Of Work

My first day back to work was GREAT! Of course I was nervous and didn't sleep much the night before but all my fears were in vain. It felt so great to be back at work. It was a real confidence booster to be affirming to myself that I can work like I use to. It was wonderful.

Saturday, October 10, 2009

Challenging Day

Yesterday was a challenging day. I had shortness of breath from 12 noon to 9:00 pm. It stressed me out to say the least. I kept busy to keep my mind off of it. I prayed to God. It was plain scary.

This morning I prayed to God to help me deal with my fear and to help me think clearly when I get shortness of breath, anxiety, or seizures. I pray for him to provide me with peace and comfort.

My friend Kim was hospitalized for 8 months fighting Leukemia. She ultimately beat it. She even had a bone marrow transplant. She has been in remission for almost 10 years now. She told me that my fear and anxiety would gradually dissipate to a level that is normal.

Friday, October 9, 2009

A Day Trip to Brooklyn

This day brought me great anxiety with some laughs sprinkled in for good measure. The concrete jungle just made me so anxious. Being out in loud restaurants bothers me. It has been 4 months that I have been a recluse. It is going to take some time to get back to my normal routine and feeling comfortable in public places once again.

Since I have had so many set backs I have developed a fear so strong that it is hard to get rid of. I wake up in the middle of the night consistently stressed out, thinking about the horrors that I have been subject to and wondering when the next one is going to strike. I know I cannot live like that. I have to shake this fear. I know that if I ask God to remove these fears; he will. On the other hand things have been going pretty darn well for me. I just have to keep on having faith.

I am only getting better with each day that passes. I know I will be just fine as long as I keep God very near.

Special shout out to Jim for the beautiful card I received in the mail - Thanks so much Jim!

Wednesday, October 7, 2009

No News Is Great News

Well I haven't posted in a while because things have been great! I still deal with fear issues but God helps me work through my fear and anxiety. I am enjoying getting back to life and my new found independence. I am greatful everyday for the billions of blessings in my life. I have been exercising and preparing to go back to work on October 15th. Thank you God!

HAPPY BIRTHDAY MOM! LOVE YOU AND MISS YOU SO MUCH. WISH YOU WERE HERE TO HOLD MY HAND, BUT THAT'S NOT YOUR STYLE, YOU RAISED SOME STRONG CHILDREN FOR A REASON.

Sunday, October 4, 2009

Feeling Fine in the Pumpkin Patch!

Thanks Bizzy, Andrew and Lil' Deeds for going Pumpkin Patch Pickin' with me! video

Saturday, October 3, 2009

Seizures

Had a great day but towards 5 o'clock I started to get some mild Jacksonian Seizures. My right foot became numb and I became very lethargic. So I just laid down and watched TV until it passed. I am going to make an appointment with my neurologist. I was doing so well for a week. I just want to get these seizures under control no matter how small they are, they are annoying and scary nonetheless. I have never had to deal with this ever in my life.

Note to self: My hands have been itching me. Something is irritating them. They are slightly swollen. It is probably because I am washing them too much for fear of contaminating my incision.

10/4/09 - Still having minor issues with numbness. Thinking about increasing my dose of anti-seizure med.

Friday, October 2, 2009

ANOTHER GREAT DAY

Yesterday I went to my primary care doctor for the tightness in my chest. She did an EKG on me and by the grace of God it came out normal. She said that after all that I have been through it would not be abnormal for me to have high anxiety and stress which can cause tightness in the chest. The chest tightness was gone by mid-day and I haven't had any since. I went through the entire night comfortably. Also the thought of assimilating back into life although exciting can be overwhelming at times. You wonder, am I going to be able to do it? Am I going to hold up? Well of course I am but I just have to have patience and have a slow go at it.

Also yesterday I drove for the first time since June! Yes I left the nest! I was very anxious driving for the 1st time in a while. I am used to always having someone by my side when I go out. Someone is always driving me somewhere. But this time it was just me. Although anxiety ridden at first, I simply took a deep breath in and exhaled. Then I started to feel good. Matter of fact, I felt great! Freedom was once again mine! I was mobile again! Able to go where I want when I want; no longer a captive in my own home. I drove myself to my employer and I met with them. I was swarmed by all my co-workers. I thought to myself, "Oh my goodness, PEOPLE!" I have been a recluse for the past 4 months so to socialize was a bit overwhelming. I was happy when I was able to speak to my boss and human resource lady in a private room without all my co-workers. I am so thankful to my employer. They have been so understanding. I am going back to work part-time on October 15. My hours will be M-F 10am - 2:30pm.

Ahhhhhhhh, Life is Good and I am just beginning to live mine again!

Thursday, October 1, 2009

Still Tightness in Chest

I am fine all day then as soon as I lay down in the evening the tightness/knots in my chest start. It lasted all night last night. I took some pepto bismol but it did nothing. What the heck? All night I was worried about having a heart attack. I hope that it is just gas. It is very distracting and I am not able to fall asleep. I am going to see my primary care doctor asap. I guess my body is not done terrorizing me. I mean I have only been going through hell for 4 months consecutive; why stop now? I really am going to go on with my life and just hope and pray to God to take care of me.

Wednesday, September 30, 2009

FINALLY! A TRULY GLORIOUS DAY!

Well I got the results from my 3rd MRI today and guess what, it's all clear. My neurosurgeon told me that I can go back to work. You couldn't break the smile off of my face. For the first time since 6/15/09, I feel a sense of normalcy and relief like I haven't known in a long time. My neuro wants to see me again in November to set up some scans so that he can send away for the plate that is going to be placed in my head. The plate will be made custom and they will be able to do that by the scans of my head. My 3rd and final surgery will be mid January 2010. I'm so happy!

Tuesday, September 29, 2009

Tightness in Chest

Ever since my 3 week round of being blasted with antibiotics I have dealt with tightness in my chest. My upper chest cavity feels tight inside and it is stressing me out terribly. There is no pain, just tightness. Tonight it is particularly prevalent. I tried taking an antacid to see if the culprit isn't indigestion. I hope this gradually fades away. I don't want to have to go to another doctor for another problem.

3rd MRI Results

Well here I was all excited and anxious to meet with my neurosurgeon today to read me the results of my 3RD MRI to no avail, he wasn't in today. So now I have to wait another day to see what my future holds. No big deal....yaaaaa right! I threw a fit when I got to the docs office and the receptionist told me he wasn't there. So my appt. is scheduled for tomorrow at 12:30pm. I swear I am going to check myself in soon.

Sunday, September 27, 2009

Forgotten Stitch


I found another forgotten stitch in my scalp today. I thought to myself WONDERUL! It was towards the front of my head. I was able to pull it out easily. It came out clean for the most part. The only reason I found it was because it felt irritated there. It was in there for a total of 31 days. It should have been removed on 9/11/09 with the rest of the stitches, 15 days after my surgery. Instead it was left in my head for 16 days longer than it was supposed to be. It stresses me out because here I am trying tooth and nail to avoid infection. Well it is in God's hands anyway and always will be.

10/4/09 - Found yet another stitch in my scalp which I removed without a problem.

Peace will Come Again

Last night I started to get a headache and my imagination started to get the best of me. I thought to myself, "Why am I getting a headache? Is my head bursting at the seems with pus?" My biggest fear is that I fall asleep forever without even having a chance to say goodbye. These are some of the crippling thoughts that come with this reality. I start sweating with anxiety, I am in a dark hole. Somehow God manages to put my mind in a better place. God is always there for me. I am able to make it back to positive land. God is healing me. God is protecting me. I believe in miracles. My body is strong. I will have peace once again in this life.

Had Another Great Day

Yesterday was another great day. I was able to take Coco for a walk and go to 3 different stores. I did have some shortness of breath from 3 to 9, I think I must be sensitive to sugar/chocolate because my breathing was free and clear up until I ate 1/2 a twix candy bar. Next thing you know I have shortness of breath for 6 hours. That really sucked. It was a great day anyway. I was very encouraged at how much I was able to do.

Saturday, September 26, 2009

Another Trip to the ER - Cefepime Blocking Anti-Seizure Med

9.14.09 Numbing and Tingling on the entire right side of my body, dizziness.

9/16/09 Numbing and tingling, diziness, muscle spasms, lips going numb. I call my doctor and asked if I should go to the ER or sweat it out. He told me go to the ER because he didn't want me to have a grand mal seizure which may or may not follow a Simple Partial Seizure. So I called 911. In the ER they told me I was having Simple Partial Seizures AKA Jacksonian Seizures and they upped my dose of Antiseizure medication. They wrote me a script to get an EEG. I was discharged from the ER and was back at Bizzy's by midnight.

Infectious Disease Dr. Appt.

9/10/09 - I started getting ringing in my ears and suspected it was the vanco. The Cefepime gave me constant diarrhea. My anti-seizure medication would pass right through me into the toilet. This wasn't good. So I saw my Infectious Disease doctor and told her that I could tolerate the diarrhea but not the ringing in my ears and possible hearing loss. So she told me to continue with the Cefepime and DC the vanco. She then prescribed me with Zyvox - another hardcore antibiotic that is taken orally at least. However I would get a nasty side effect from the Zyvox and that was shortness of breath and racing heart rate. I wouldn't be able to breathe freely for at least 8 hours at a time. It is a terrible and scary feeling not being able breathe. I would only be able to finish half the prescribed dose. I had to DC the Zyvox after three days. I was only able to tolerate the Cefepime and that gave me "the runs" 24/7. As a result I started getting seizures which eventually would land me once again in the ER.

Switching Antibiotics at the ER

9.5.09 In the ER they consulted with my doctors and decided to try me on Cefepime and Vancomycin. Both were administered through my PICC line. I did fine with the Cefepime and then had a problem with the Vancomycin. The Vancomycin was a 2 hour infusion. Towards the end of the infusion I felt my scalp suddenly start to itch. Then my face and neck turned tomato red and my blood pressure and temperature rose to 99.3. I was having a reaction known as "Red Mans Syndrome". I was given two Benadryl's and admitted to the hospital yet again. I was on a schedule of the Vanco every 12 hours and the cefepime every 8 hours. They monitored me in the hospital while continuing to give me both antibiotics and of course benadryl before my Vanco infusion. It was agreed that I was tolerating the Vanco well enough with the benadryl. So I was discharged on Labor day and went back to my sisters with instructions to continue the antibiotics.

The Antibiotics

8.29.09 The antibiotics were very trying for me. They were completely incapacitating. While I was still in the hospital they administered Tygocil - a super strong antibiotic that is so strong it has to administered via IV only. The Tygocil made me so nauseous that I could do nothing but remain in the fetal position with a ball of bile in my chest just waiting to come out of my mouth. Of course just having had brain surgery, throwing up was not an option. I asked the doctors, "What is this poison you injected into me?" It was 24 hour nausea. They offered me anti-nausea medication like Zofran and Reglan to no avail. I was so nauseous that I couldn't even eat, just couldnt get anything down, couldn't brush my teeth, couldnt bathe myself.

9.2.09 My PICC line was installed in the hospital that day. It was NOT a pleasant experience. This was so when I was sent home I could continue to administer the Tygocil through my PICC line intravenously. The next day I would be discharged.

9.3.09 I went home. The ride home was awful. I turned green on the way home. Still so nauseous from the Tygocil. They had the antibiotic delivered to my house and an IV pole along with saline and heparin syringes so I could administer the tygocil myself. My fiancé Maurice helped me with this. I stayed at my sister Bizzy's house because it was closer to the hospital and someone would always be home with me. The nausea never improved and I wasn't able to do ANYTHING. I knew I couldn't keep going on like that. It was counter productive to my recovery not to be eating, not to be moving around. It was a Saturday and I ended up having to go to the ER to get my antibiotics switched.

2nd Craniotomy

8.28.09 This surgery was much shorter and much less invasive. They washed-out all the pus and took many cultures. After the surgery I was rolled to my room in NICU. There I was quite comfortable until they decided for some INSANE reason to stop giving me morphine, put me on Tylenol with Codeine, and move me a step down to another area in the hospital, all less than 24 hours from surgery. This sucked! Without the morphine my pain was so intolerable that I could only cry. To top it off I had incredible nausea. Everytime the nurses came in I would ask them for Morphine and they would say, "the doctor has changed the orders to tylenol with codeine, sorry." I was glad when my BFF Barbara showed up because she threw a fit when she saw me in that condition. She demanded the nurses contact my doctor and have him order morphine for me. Thats exactly what they did. I was ultimately given morphine and immediately felt relief. I was so exhausted from the pain, tears and grief that I fell asleep. I can't tell you how relieved I was. Bottom line, the doc took me off of the morphine way too soon. It is good to have an advocate in the hospital.

No infections grew on the cultures so that was good as MRSA was a suspect culprit. They decided to blast me with antibiotics anyway just to be extra cautious and it would be for a duration of 3 weeks.

Friday, September 25, 2009

2nd MRI

8.25.09 I took the results of the 2nd mri to my neurosurgeon that day. I was hoping to hear, "looks good, your free to drive and go back to work". But no, it wasn't to be.....yet. He said, "We're going to have to go back in and do a wash-out because there is pus in there". "We're also going to have to take that bone plate out leaving you with nothing until December when we do the 3rd surgery to put a plastic plate in its place". This is not verbatum, but you get the jist. So now I am walking around with a soft spot on my head and have to be very careful.

Needless to say I was devastated yet again. 2nd surgery was scheduled for 8/28/09.

Happy Day

I am having a great day today. I cherish it, every moment of sunshine and happiness. Oh I love it. I took my dog for a walk today. I was nervous as hell, but it felt good to get out there and do it. Walk in the sunshine! I was so thankful to God for giving me that gift!

Trip to the ER

8.18.09 I go to the ER because my legs are numb for 6 hours straight. Turns out it was just seizures. My anti-seizure med isn't working properly. I switch from Dilantin to KeppraXR. It works better for me. Yes this was terrifying, yes it was awful.

Emotion

Elmers Glue White Pus Gushing from Incision

8/20/09 The day after I saw the doctor I wake up in the morning. I bend over to let my dog outside and I hear what I believe is a buzzing on my head. It startled me. I ran into the house to see if there was a bug on my head. But no, it was worse, it was a thick white pus that was erupting from my scalp. It was like Elmers Glue. It kept spurting out like a volcano! I almost fainted. With each gush it made a buzzing sound. It did this for 24 hours. In the end my neurosurgeon called it a sterile abcess. My cousin Patti came over with Bizzy and the Baby. We were trying to have a conversation but my gusher kept buzzing like a kazoo. I felt like a whale with a blow hole! video

Scalp Incision Infection


8/19/09 I notice yellow pus on my incision. Looks infected. I go to my dr to have him look at it. He doesn't seem concerned. In fact he said, "I'm not impressed". He prescribed me Augmentin (antibiotics). That was the end of it or so I thought.

Just Another Fright Night

I had a big day yesterday. What was big for me. My sister Aimee took me for my MRI and then I went to the grocery store and CVS. That was a lot for me. At one point I had to sit down and breathe. I am so out of shape that I lose my breath going up stairs or walking around for too long. I havent been able to consistently exercises since 6/15/09. It is amazing how fast you can lose your fitness.

Well I dont know if it was the day or what. But I didn't feel well last night. I had a pressure in my head. My brain just wanted to rest. My head felt slightly numb and tingling. I decided to up my dose of KeppraXR from 1000mg/day to 1250mg/day; since I was still getting simple partial seizures a couple times a week. I tried to fall asleep at 10pm last night. But everytime I closed my eyes I could see a freight train of thoughts passing through my eyelids at 100 miles an hour. I would get vertigo. I got nausea again and my limbs felt crazy, i just cant describe it, like they were unpredictable. So I turned on the TV and watched what i think is called "the late show" with Conan O'Brian. I took a zofran for nausea and drank a lot of water. I knew eventually the seizures would subside. Well they subsided enough around 1am. So I was able to fall asleep finally.

This whole thing is a nightmare. I've got to get and EEG and get these seizures sorted out so I can get on with my life! There is so much going on....Im just overwhelmed. But im gonna do it because thats all there is to do.

Thursday, September 24, 2009

Alone

I cant stand being alone. Before all this I used to relish it. But now it is plain terrifying. I find great solace in the company of others. I find that when I am alone I am prone to obsessing about my problems. My friends and family are a huge part of why I am going to survive this. I am so greatful for all the wonderful people in my life. Right now I am alone and terrified, alone with my thoughts. I guess it is just the day, having had the MRI today. Not being able to read the radiologists face. They are sworn to secrecy. Today, right now in this moment, I am in a bad place. I want to cry. I am crying. I feel overwhelmed. Not the first time, wont be the last. My friend Barbara should be here soon. I know I will feel a lot better when she gets here. Cant wait for life to get a little better.

3rd MRI

Well today I had my MRI. I am so anxious about it. Although I have had this gut feeling all along that this is going to come out clear, I am still stressing about it. Today is Thursday. My appointment to see my neurosurgeon isn't until Tuesday! Ahhhhhhhhhhhhhhhhh! I guess I am just going to have to sweat it out. I am just so scared right now. My future depends on the results of this MRI. Well, mind over matter right? I have a choice to let fear overcome me or I can muster up all the strength I have and choose the positive/optimistic route. Easier said than done. I am going to lay down and listen to the positive thinking CD that my cousin Kathy gave to me. Right now it is the only thing keeping me sane.

A Very Bad Day

8/2/09 - This day I felt dizzy, my legs were getting electric pulses through them and felt like they didn't want to work. Then I had a piercing headache that was focused on one spot of my head. I was nauseous. I came very close to going to the ER. I didn't. I just cried and prayed to God. The thoughts that went through my mind that day were:
- Is it a brain hemorrhage?
- Are my legs ever going to be normal again? Will I be able to walk?
- Am I going to close my eyes and never wake up again?
- What is going on in there?

I thought to myself, "I am going to miss my family so much if I go".

An Attempt to Switch Anti-Seizure Meds

7/10/2009 - My neurologist suggested that I switch from Dilantin to Lamictal. I took my first dose of Lamictal. 2 hours later my vision blurred and my heart raced. Again, terror gripped me, I was home alone and didn't know what to do. I called my neurologist and he told me to discontinue the Lamictal and stick to the Dilantin. I sweated out the side effects of the blurred vision and heart racing just praying to God to take care of me. Eventually the side effects would subside.

The Homecoming

6/26/09 It was great to be home and out of the hospital. However the day after I arrived home the right side of my body went numb, yet I still could move my right side. It was terrifying. I didn't know if there was a problem with my brain surgery, if it was a complication or what. Turns out it is what I believe to be Simple Partial Seizures aka Jacksonian Seizures. Now that I am almost a veteran on the subject, it just would have been nice if the docs would have given me a heads up on what to expect after brain surgery. It was simply terrifying. I didn't know if I was going to die or if I should go to the ER. I just didn't know and that wreaked havoc on Maurice and I. It is what would be the 1st of many successful attempts at what I like to refer to as "brain terrorism". Never in my life did I have to deal with seizures and anti-seizure medication. Little did I know that the anti-seizure med that I was on was not working for me.* Ignorance wreaks havoc on lives.

*Anyone who has brain surgery is put on anti-seizure medication. It may be temporary or the rest of your life. It all depends.

Wednesday, September 23, 2009

Break Down

Today I had a break down. I have been waiting and waiting, anticipating my MRI that is scheduled for tomorrow. God help me if it does not come out clear this time. I don't know what I am going to do if it does not. I have been through 2 brain surgeries already. I am tired, worn down and fed up. I have been through so much that I don't even know how I have endured this brain terrorism. I have had enough.

The Recovery Begins

6/18/09 I was in NICU longer than anticipated as there were issues with my blood pressure; it was too low to get blood to my brain. There were a few times when my family would be visiting with me and I would say to them, "My blood pressure is dropping". Next thing you know my eyes roll back into my head and my lips turn white. Ultimately I needed a blood transfusion. After that my pressure improved and the problem was resolved. I have always had naturally low blood pressure as I worked out and did cardio most days of the week. I miss working out and doing cardio all the time. I am determined to get back to that in due time. Eventually I would be discharged from the hospital on 6/26/09.

Yet Another Fright Night

Last night around 7pm my nose went numb then the right side of my face, then my right foot. It didn't subside until about 10pm. My left knee was aching. I woke up in the middle of the night with knee pain. It felt like it was swollen. What the heck is going on? I feel overwhelmed and terrified. My imagination is going wild with frightening ideas of what it could be, is it my brain, or did I simply sprain my knees somehow? As bad as my imagination gets, I counter it with good thoughts. I tell myself, "God is protecting and healing me". Then I imagine myself fully recovered, working again, driving again, in the gym again, doing cardio again. There is always that nasty little thought in the back of my head that fears never being able to do those things again. But I squash it with great effort and optimism. I hope to have a great day today and remain calm, centered and focused no matter what occurs.

Tuesday, September 22, 2009

The Surgery

6/17/09 I was transferred to a hospital that does neurosurgery. Upon arriving I met with my neurosurgeon who greeted me and just plain had the best bedside manner. He confirmed with me that my Meningioma was benign and that I would fully recover. Ah if only it were that easy. It was a five hour craniotomy. The tumor was removed in 3 parts. The surgery went well. After the surgery I was rolled back to my room in NICU. Everything was a fog. I remember seeing 3 blurry faces. The nurse said, "Do you know who these people are?" and I said "Yes, that's Bizzy, Aimée and Maurice". Then I started to cry and my sisters asked me why I was crying and I said "Myyyyyy Haiiiiiirrrrrrrr". LOL. I was so out of it and on morphine. Then I fell in to an exhausted, healing sleep. My family stuck around and talked, played UNO while I rested in the bed. It was a great comfort to have them there and listen to them while I rested. Then they left and I continued to sleep. The next day I woke up and managed to text message my BFF Barbara. She almost spit out her coffee when she received my text message. lol.

The Perilous Journey Begins


6/15/09 Healthy as a horse all my life until I turned 34. That's when my life would change forever. I was putting clothes away at 10pm on a Monday night when suddenly my right leg stopped working. It became numb and tingling, then my right torso went numb, then my right arm and then I couldn't talk. By the time I was in the ambulance everything had restored itself. In the ER after a CT scan I was diagnosed with a Meningioma (a type of brain tumor) the size of a baseball or maybe a softball. The ER doctor walked up to me and said Maria you have a brain tumor and need emergency brain surgery. I asked the Dr. if I was going to die and his response was "I don't know, It's anyone's guess". Well that put me into throws. What a jerk! He could have said "I am no expert, it could be benign or malignant, we shall see". I mean he could have handled that a lot better! I was in shock. It just cant be put into words what I felt in those moments. I can tell you that I was praying that it was all just a terrible nightmare and that I would wake up from it any minute; but it was happening, it was reality; and I had to deal with it.