Having Good Times

Hello all,

I must say I have been feeling awesome as of late. I went to the gym for the first time in a long time and it felt great because that is one of my favorite things in the world. I wasn't able to do my usual workout, but it was a good start.

Today is the first day that i'm not feeling so hot. But I feel that it is nothing that rest cannot resolve.

Also I went to a wedding last weekend and was able to dance all night. I do have some serious anxiety at times. However, distractions seem to dispel that anxiety, like having friends, family and my dog around to make me feel comfortable and relaxed.

The Anticipation is Killing me!

Well what I have to look forward to:

- MRI Results in May 2010
- Whatever the results may be it will mean:
a. Surgery in the month of may
b. Getting my head cut even further back then the original incision.
c. Having additional skull cut and removed and replaced with some molding clay
d. Having the surgeon fish around in my brain for rogue tumor pieces (the Neurosurgeon mentioned that he had to leave some of the tumor behind from the 1st surgery because it was in a vital area of the brain that is too dangerous to touch :-) so he is cutting additional skull to possibly reach in that dangerous area from a better angle.
e. Guessing what is going to function and not function on my body or in my mind after surgery, if I will be lucid, If I will be myself, If I will be disabled. If I will survive the surgery, If I will have a good quality of life, If I will live.
f. Wondering what I will be in for if I'm lucky enough to make it to recovery because recovery is always fun.

Is that enough of a load for someone to be carrying on their plate? I get to carry that poison for thought around for an additional 2 months! I sure hope that I dont murder someone within these 2 months because I am really stressed. I feel like these are my last days. I'm going insane. I'm going out of my mind. I'm going kookoo. I'm miserable.

To all of my friends and supporters who read this, I give you a big sincere Thank you. I appreciate every single comment of encouragement and support that you leave here on my blog, send me in an email, in a phone conversation or even a visit.

To all you friends (and all you cowards know who you are) who have decided to drop me because you were too scared to ride out the rough waters with me SCREW YOU! Well, I really don't mean that.....but have fun living with that decision for the rest of your life! and may your friends never abandon you when the chips are down like you have done to me.

GOODBYE!

and the plot thickens

Well another appointment that didn't go my way. I saw my Neurosurgeon on Thursday, 3/11/10. He looked at my latest MRI and concluded one of two things...1) that there is new tumor regrowth or 2) there is residual (left over tumor from the 1st surgery). So he said that he was going to have to go back and tinker with my brain again and he may have to go back further cutting additional skull. In the same surgery he will replace the missing bone flap (plug up the hole in my head). I wasn't expecting more disappointing news, I was expecting to hear OK all looks good and i'm just gonna cap you off and I dont have to touch your brain. I dont know how long the recovery is going to be and I dont know WTF.

It took me so long to write this update because I was so upset. I'm tired, worn and weary. I will continue to pray to God for this final surgery to be the last one. He said later down the road, IF there is tumor regrowth I will have to get radiation. I have to get another MRI in May and will bring it to him to look at on May 13th 2010. He will be able to determine if it is left over tumor or new tumor regrowth. My surgery will follow immediately in May 2010.

I WANT TO LIVE A BETTER QUALITY OF LIFE.... I WANT TO LIVE PERIOD..... OH AND DONT FORGET, MOST IMPORTANTLY I WANT MY FREAKIN' GORGEOUS HAIR BACK.... I'M A FREAKIN GIRL FOR * SAKE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

P.S. I dont want to hear ANYBODY saying, "well at least your alive, oh and you have so much to be thankful for" or any other obvious things that I already know. Bottom line...IM ANGRY AND FRUSTRATED! THIS SUCKS!

Great Saturday

I had a great day today. I was able to go to several stores today and get many things done. My leg is working fine even with the slight numbness. The distraction helps a lot. I even took my Coco on a long walk. I really enjoy life. I am very greatful to be alive and cherish my life, my family and friends.

Scary Thursday

On Thursday around 4:00pm I got a global headache as in it was not concentrated in one spot. I took some aspirin to alleviate it. Then around 6pm my right foot and most of my leg went numb and I felt like it was going to give out on me. Anxiety and panic set in as it took me back to that fateful day of June 15 when this whole mess started. It was numb from 6pm to about 10pm. Even my R arm felt slightly numb but nothing like my leg and foot. It was so messed up because I couldn't feel where my foot was going to to land. (picture going up and down stairs with one of your legs numb...not fun.)

Friday was a better day although most of the numbness subsided there was still some there. My leg still doesn't feel normal, it feels slightly compromised. I am just disappointed because I haven't had numbness that bad since before December and I felt great for half of January and the entire month of February. I did not have any numbness at all for that period of time. I thought to myself, "look at me, i'm on the mend afterall, the worst is behind me." Well now i'm not so sure about that. Just another evening of sheer terror. I do notice that any episodes that happen tend to occur at the end of the day. I dont think i'll ever get used to this.

Neurosurgeon canceled on me

On the way to work this morning my neurosurgeon's office calls and asks me if I could come into see the doc today instead of tomorrow. I said no it's too late for that. So anyway I am rescheduled for next Thursday, 3/11/10 to see my Neurosurgeon. I am not anxious about it because I believe I know what he is going to say. He is probably going to say lets wait another 4 to 6 months for you to get another MRI and then we'll take it from there.

MRI Results

Well i'm listening to a very appropriate song while typing this post. It is called, "Shattered Dreams". Today I traveled through a supposed "snow storm" to Philadelphia to get an MRI and to see my epilepsy docs. They compared the MRI from December that showed the swelling with the MRI from today and to my GREAT dismay, there was no change. However I have been feeling great for the entire month of February. However today, I dont know if is my nerves or what, but my right leg and foot feel slightly numb. Heck, I dont know what I feel anymore. I was so disappointed. I cried. Then I stopped and picked myself up. I am up but I'm disoriented as in completely lost. I feel like Alice in Wonderland. This is not the way that I imagined this day. Not what I wanted to hear. I feel high anxiety and depression. I'm just glad that I am doing well regardless. Everything is functioning properly. I dreamed of getting my surgery over and done with in March. Alas I feel that is not going to be. Perhaps this is somehow a blessing in disguise.

Anyway, I see my neurosurgeon on Tuesday and we shall see what he says upon laying his eyes upon my latest MRI.

February 25th

Well my next MRI is next Thursday, February 25th. That will determine what will happen within the next few months. Of course I am hoping that the MRI comes out clean, the swelling is gone and the surgery to place the plate can be scheduled and I can get back to growing back my mane.

I've been doing good as of late. I did a 1/2 hour of cardio on my stairmaster on level 1. I felt a little funny afterwords because I could feel the hole in my head pulsing extra hard through my scalp. Gross right!

Still doing good as of late. Still some anxiety. Too much snow!!!!

Still Going Strong

I feel so good. I feel like the worst is behind me. I feel like I am on the mend for sure. I feel excited about life and getting mine back. I get anxiety over any little physical pain, muscle soreness or headache that I may have. I am sure that will subside overtime. I can't wait to get my third surgery over with. I know I will feel so much better physically and mentally once the hole in my head is capped. I don't know, there is always that deep dark place that fears tragedy is right around the corner again. Regardless, I am living every moment of my life with outright enthusiasm like I never have before.

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.