I have it!

I’m obsessed with how you make me feel. Hope keeps me strong and then it brings me down for what I should already have. I can feel it hard core. I feel it. Feel the energy cupped inside the cusp of my neck and shoulder, it goes right through me. When I go to speak it would all seem like a lie fallen on someone’s ears if I told them, that I already have it, but I do. I do have it. I just can’t show you. It’s hard for me to show you how it feels. Can’t show someone a feeling. If there was a way I can put my hand on you and let it radiate through my arm and into my hand finally enter you, you will then believe me. Believe. I already have.

#ihaveit #ifeelit #feeling #believe

I return...

I'm back and totally pumped up about it. I thought to come back to my outlet. So here I am... I return.

July 16th Episode

July 16th Episode

It was a bit chilly walking to the train station, once I sat down in the station to put on my make up, my body felt hot. When I was done putting my make up on. I felt my insides shaking, (extremely wired). I walked up the stairs to get to the platform and got on the train, though I don’t remember doing that. I had my two friends with me. I found a seat and sat down. The next thing I knew was I was trying to keep my eyes open so they would not go back. The voices of my friends started to fade away. That is all I remember. All I remember was holding onto a pole that was next to me in my seat and felt that I was clutched on to it, I was not putting any strength into the grip but my hand was doing it on its own. My friend told me the rest.

My friend (Lola) states the following:

I was talking to Samantha (my other friend) as my eyes became very watery as if it looked like I was about to cry. My left hand started shaking and going into a pumping fist. Samantha had said that I did not look good. Lola asked me if I wanted to go home. I shook my head no and said I’m tired. They kept asking me questions and I would not answer. I do remember in the end my friend Samantha asking me questions and then the second she finished the question I could not remember what she just said. She had to repeat her question a few times. I do not remember much of any of this. I remember feeling very tired after this episode and then my head started to hurt a little bit.

This episode was short and simple not like the ones I normally have. Thing is... when I'm alone I probably have these not knowing I'm having them. I will try and remember other episodes and try to tell you mostly everything I went through. Till then. Cross fingers I do not have anymore episodes. I see the doctor on Tuesday.

#complexpartialseizure #simplepartialseizures #idontremember #episode

My letter to the Epileptic Dr.

July 7, 2009

Hello Dr. ----,

Please find attached a DVD of my episode on Friday, July 3rd. I do not remember most of the first half so I will tell you what my cousin told me. (She was with me). What I do remember is how it started. I was folding clothes in my room and started to feel hot (which I’m always cold) I turned the fan on which I could not feel, so I turned it up more and directed it on me. Still I could not feel the fan. I had finished folding the clothes and took a shower, I felt a bit drained. I went back to my room with my robe on to blow dry my hair. As I was drying my hair, I did not feel well. My insides felt, I can’t even explain how I felt. When I would section my hair I put the dryer down. When I put the dryer down, my right hand would curl up. I got frustrated and tried to straighten my hand out. Kept telling myself I was fine. I only used two words “I’m fine” at the time I didn’t realize my speech was impaired. I continued to dry my hair and tried to ignore it, but every time I put the dryer down the same thing would happen. I then knew I was going to seizure. I still continued to dry my hair, trying to deny it. I was using the mirror to dry my hair and noticed that my left hand was constantly picking up the top of my hair very fast as I was drying it. I stopped and knew to call my cousin (who was already on her way to my house). I called her and told her I was not feeling well (not knowing my speech was hesitant, slow, missing words, repeating myself a lot and slurring) My cousin was a few exits away. I hung up and then called her a couple minutes after because the sensation was getting worse. Again I thought I was speaking normal, but I was not. I told her that I was worse and that I was going to unlock all the doors now, because I didn’t think I was going to make it and pass out by the time she got there and that I was going to lay down on the couch. I felt my insides shaking and the feeling of no control of my body coming. I called a friend thinking she was in the neighborhood so I would not be alone as I felt the feeling coming on stronger. No answer so I called someone else. It was hard to make the calls but I finally did it. As I was speaking to my friend I realized my speech was not normal. As hard as I tried to speak normal it came out as if I was slow. I started to get emotional because I had no control of my body and speech. I then received another call from another friend and they picked up my abnormal speech immediately and she was nervous and didn’t understand why I was speaking that way. I just got more frustrated as I lay on the couch unable to move. My cousin arrived and all I remember from that point on was her taking the phone from my hand and telling her that I could close my eyes now. The only reason I remember the 2nd half (which is on the DVD) is only because I had watched it over and over again. My cousin told me the following from the first half I do not remember:
When my eyes were closed they were moving around rapidly
I was in and out, I would not respond to her and then I would at times.
She also picked up from the phone call and from when she walked in that my speech was not normal. She had told me now, that it alarmed her and got her nervous.
My body was twisted and stiff laying on the couch.
My arms were limp though my hands were jerking.
I kept making noise with my mouth (which you hear on the DVD) like a snapping noise.
She also told me that I had asked her to move me to sit up, but it was hard for her because my body was stiff and twisted. I do remember it was hard for me to breathe at times. Also I remember getting pain in between my breast. My heart was not racing or anything like that. I just remember having a dull pain which only lasted about a minute or so.
I came out of it and told her about 10 mins. later that I felt it coming again and she told me that is when I had said for her to get the camera. She helped me lay down, which I do not remember The video is broken up in clips, we might have lost a few seconds in between. I do remember my head hurting from time to time and at one time I felt extremely dizzy. It started around 1pm and lasted until 3pm. I had gone to sleep about a half hour later and woke up with a tremendous headache that lasted through out the night into the next day. My muscles were weak and ached that night and the next three days. I still feel very drained and a bit out of it. I’ve also been feeling numb since I’ve been taking Trileptol on the right side of my face and head (the side of my surgery). Please let me know when you would like me to come into the office.
FYI – The video was taken in different angles, you will have to put your head sideways to watch some of it, I apologize, my cousin was under the control of my camera. You will have to play it on a computer for it will not play in a DVD player for the television. I apologize once again.

That is all I sent to the doctor. My cousin remember bits here and there and she had told me recently that I was crying through it. I do not recall this. The video is disturbing as my one friend Ann told me after watching it. It was hurtful to watch myself. It's starting to take a toll on me that I have accepted that I'm one of the people. One of the people who have a seizure disorder and that is one thing I have never imagined would happen to me. I try to stay positive and strong, but it starts to get frustrating when it doesn't stop and you have no control of your body. I'll stand up and keep my head up, because I know that I'm grateful just to be alive.

Will The Disaster Ever Go AWAY?

A friend once told me “we understand but some things can't be chalked up to your not feeling well” after I had told them that no one understands what I go through. Isn’t it funny how it’s so easy to say things? I know for a FACT that not one person knows what I feel completely and what I go through. That same friend is telling me that my actions are not from me not feeling well. Does anyone understand, that me not feeling well is who makes me me? No. Does anyone truly understand what it feels like to be me? I can answer that for you. NO. I do what I do and feel what I feel because of who I am. Being sick has made me who I am along with all the things I’ve been through in life. This has molded me. So much has happened in my life that I can not even father to type. I’m told I’m not the same person I use to be. That’s right, I’m not, I can’t even remember who I use to be. My life has been filled with sorrow and pain. How can I be that same young teenager who didn’t know what life would bring her down the line? That teenager was a lot stronger back then, yes I’ve always had a strong tolerance for pain, but no one understands as life goes on and the more you get sick and the more sorrow enters your life, your strength seems to whimper away. Everyone sees me as a strong woman. Much do they know it’s all a façade. I don’t think people understand what it feels like to have pain in your entire body and feel your strength being torn out of your soul. When I was 9-months-old I had pneumonia and was hospitalized, where I turned blue and very ill. From growing up in pain and trying to ignore it to having a few surgeries and a major surgery. From losing a brother from a heart disease knowing I will never see him again. “You need to get over it.” I will never get over missing my brother. It has scarred me and when he died, part of me died with him. Constantly at the doctors and in the hospital, that puts a mental toll on you and a physical toll on your body. Does anyone I know, know what it feels like not to be able to feel good? Not able to think straight because your head is spinning and your right side of your face and head are numb, your insides ache and you can’t stop trembling? The not knowing what is this pain coming from and am I about to have another seizure? The pain after the seizure. The excruciating pain that lingers inside after a year and half of having cranial surgery? The tumor that grew back 4 months later, the suffering and acceptance of having seizures, beside all my other health issues, which are not just a cold thing, it’s important things. Does anyone know how that makes ME feel? To accept the fact that I am ill? My whole life has been this way and you can say you understand but some things can’t be chalked up to your not feeling well. No, I’m sorry, I love all my friends and family to death, but me not feeling well has everything to do with what I do and who I am. From being treated for infections, with the medication that literally almost killed me. Another ride to the hospital… with transfusions being transmitted to my body. Needles pricked into my veins and pill after pill, painkillers being put through my IV that never put a dent to the pain relief. When I go to the doctors I’m told I was overdosed in the hospital, but they had to, it saved my life. Does anyone know what it feels like when you walk out of your house not able to walk feeling your spine being ripped out of you and the emptiness inside your soul reminisces about the message the doctor had given you when he said “they saved your life” I almost dropped dead. Does anyone know what that does to you?
All my memories mustered into fragments. In ICU I saw my brother who has passed away, leaning on the door frame of my room when I laid there crying from the pain thinking I was on my death bed. He was there to watch over me. Another fragment of coming out one of my surgeries when the nurse came over and said I don’t like the way you are breathing and quickly gave me oxygen. I didn’t even realize I wasn’t breathing right.
Fragments:
Listening to the MRI machine noise brings memories of all the time each part of my body was scanned. Worried with what they will find.

My breast tumor biopsy… “You want all three done?” “Yes” “Wow, you’re in for a ride, we only normally just do one at time, it’s going to be painful”. I didn’t feel a thing, but felt the anxieties of the Cancer that runs in my family that might be living inside my body. Waited and waited to get the good news that it wasn’t Cancer but I had to go back for the other tumors in my other breast. I never went.

Walking into the operating room to have cranial surgery. I wasn’t even rolled in. It was cold and big. I was so confused wasn’t sure if I was going to wake up from it.

I felt them rip the tube out of my throat.

“We have to do a bone marrow”. My sister cried for me not to do it because it was too painful. They never did it because they knew I would go back to NY and they would want to do it again. My blood count was at a number where they couldn’t do the bone marrow by the time I hit the doctors office in NY.

What is wrong with me?????

What will they find now????

Can they help me?

When will the pain and agony go away?

The blood was just surfacing to my skin and I thought nothing was going to stop it.

At the hospital I was told “That sounds like a seizure to me, why didn’t your doctor put you in the hospital?” “I thought I was having a stroke, my doctor said I was fine and just to take the antibiotic, why didn’t she send me to the hospital?”

I was dying, literally dying.

Why does my heart ache so much, and why does it still ache?

“You shouldn’t be going through all this… you are only 32”

“Here’s a rx for a breast sono and you HAVE TO get an echo done, I can here the click in your heart, you still have that murmur.”

Is my heart broken?

“I have given you all the pain meds I could give you, it’s time for you to see another doctor there’s nothing else I can do for you.”

“Clinically you are having seizures.”

As the doc held my EEG report in her hands… she looked at me sadly and said. “You are having seizures.”

“There’s nothing else we can do for you, you now have to see an epileptic sp
“The meds are making me lose my hair, my appetite, I feel so angry and aggravated, I’m now soooooooo sensitive, what are these meds doing to me?”

After getting out of the hospital I was on a high dose of treatment to bring my platelet count back up…. It was the most painful treatment. I just wanted to be held while I lay in my bed disabled. I wanted to understand why I always fall into pain. I wanted love.

I fell, and love wasn’t there to hold me.

I punched my back and still the pain took my punches with numbness.

I had to learn to walk again, use my hands again, open my mouth again. I was scared.

I WAS SCARED AND STILL AM!
These are only small fragments that go through my mind every day along with the physical and mental pain. I give love and I guess I expect too much love in return, I’m only human a scared human who doesn’t know if her life will ever change. If her life will get better with her health and broken heart. Will she survive the disaster that lives inside her?

#mylife #istillstad #alone #chalkedup

Dear Diary,

Dear Diary,
How do I stop the hurt and the anger? I try not to think of it but it lingers deep inside. I want to rid it. I want to cry thinking that will release it. Thing is... I just can't cry. It won't come out. I try to think positive but sadness is the emotion inside. I try to think happy thoughts but then the hurt is intensified missing the happy moments. I feel like I can't win, I just want to erase it. Erase the hurt, pain and anger! Do you know what really sucks Diary?? I'll tell you... You can't answer me... that's what sucks. But you know what, I can sit here and type up my venting emotions, my confusions, my my my my well you know... type about MY soul.

#deardiary #blog #emotion

The so far...

It was about 2:30 pm. The air was just different today, the sun was warm but there was a calm breeze about it. Walking was a struggle for I felt each bone in my lumber spine being pulled out of my body sending pain through out my body. I was a soldier and took the pain. I kept walking with slow movement, but I was walking. My face was bare from make up, my arms dangled on my side as my bruises stood out. My strength was buried somewhere in my bed. I forgot to take it with me. Tired, but determined. A thought came to mind... I would have not been here today, if I didn't go to the emergency room. No one walking around me would have ever known that I almost died on the 4th of July. No one around me would ever think that I'm sick and I'm suffering as I walk to the train station to go see the doctor.

I think that's when it hit me. That's when I realized how critical I was. The doctors note that said critically ill didn't phase me. The hematologist in NY telling me that they overdosed me in the hospital, but they had to... it was an emergency... it saved your life. Still those words didn't phase me. Just walking down the street alone, I realized. I realized that I could have just dropped dead out of nowhere the week before and it scared me. I don't know why, but I can't muster up the strength to cry. I thought to let it out, it would release some sort of that mystery emptiness I have. Heck, I made it. I went to the emergency room, I did not hemorrhage though I was right about to, but I made it to the hospital in time. So world I'm still here, like it or not, I'm a survivor and you can't get rid of me.

July 11, 2008

Saying...

Someone told me that I am AMAZING, that they are grateful for everything I have done for them. This someone touched my heart when they typed those words to me. I’m only being myself and it showed me that people can really see the good inside me. The caring heart that is open to the ones I love and in need. Some might think I’m crazy, but I do not believe in God nor any of the religions. I believe in myself and in souls. So when I say I was put on this earth, I wasn’t put on this earth by God or any higher being, I was put on this earth because my soul is a healer. I am here to help others. Give comfort to others and be there for even if it’s to hold your hand. I don’t do the things because I think it’s my job. I do what I do, because it’s what my heart and soul tells me to do, I’m sort of programmed that way. When you have entered my life and you’ve touched my heart and I say you are in a special part of my heart, it’s the truth. You are forever inside me. Being a Cancer, shows the motherly behavior I exude. Something else I can not help. It’s who I am. When I love, I love very deeply. I don’t just love, to say the words I love you, that phrase is so simple to say. If I tell you that I love you, you should know its deep in my soul. But, there is this one particular person who is asking for help and friendship. Which I have, and continue to do, this person has been stuck in my heart lately and I wish I could be there all the time face to face. It’s odd how this person brings me calmness and I feel I do the same for them. As you know I’m a woman who expresses her emotions and words. I want to express to my friend that I love them, I’ve never told them, but it’s not I’m in love I just love the person he is, because he’s touched my heart. How do I go about telling him, that I really care for him and he definitely has a special place inside my heart and that I love him, with out him thinking I want to be with him and making him think I’m saying I’m in love with you when it’s just I love you and don’t run away, I love you my friend. Sometimes words are just left to be unspoken and my actions should show them instead. To all my friends, you know who you are. I love you so much and it’s all of you who make me me and the strength I have inside is from all of you holding me up. I LOVE YOU!

Diminish

I rub my eye as the nuisance still aggravates me. My heart is beating, but it feels like it's in a shallow well. I know its beating but I can't feel it, it feels too deep inside me that the vibration is lost between my hand and my chest. So much is going through my mind but at the same time nothing is there when I think back 2 seconds ago. Am I on some natural high? It some what feels like an outer body experience I do the things I need to do, but I don't feel the movement.


I should update you on some of my blogs. I'm still lost don't worry that didn't change. My biopsy for Breast Cancer came up benign. I have to get checked every 6 months, that's next month. How time flies. The tumor inside my head is back, going through all different pain meds and doctors to figure out what the next step is. Radiation was a suggestion, but not sure if that's possible. Neurologist doesn't want me to have another surgery as he put on that sad face. Tired of going back and forth to doctors and getting no results. Tired of feeling the way I feel, but I've learned to just live with it. I'm alive and really that's all that matters.


It's wild that I have my own crazy problems and I conjure to shun it outt to worry about everyone else. It actually occupies my mind in not thinking there is a problem embedded in my life. Heck I'm breathing… I have my family… I have my friends… I have a job… I am loved… so why hover my problems? I step away from it to make it fly away on its own, or just keep it wide open for some sort of positive energy to dissect it and diminish it.