CagedBird

Stroke Survivor - female
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  1. CagedBird

    Im scared

    By CagedBird,

    I woke up at 3am. I remember people talking to me and me being in a hospital so I thought I just woke up from a dream but I also remember waking up scared because something was pushing my body. I felt really off balanced but my stomach hurted really bad so i walked to the bathroom. nothing happened so I laid back down and although I was still scared eventually I fell back asleep. I woke up again around 9am. I started looking at tv when I started to feel really hot and my heart started beating really fast. I felt dizzy and nauseous. I knew I could not yell for my dad so I sat up to go get him but something pushed me back down on the bed and my head hit the pillow. I called my dad from my cell phone and he came in here. I felt normal again.
     
    Unfortunately, I have been having twitches of dizziness all day. They feel just like they're about to turn into a seizure but I will just get a flash then it goes away. Ever since I woke up this morning, my pinky finger hurts, I scratched my leg, and my tongue is sore from where I must have bit it. Seizures? Panic attacks? Demons? Seems like everyone has a theory but no one has any answers. I have an appointment with Duke neurology next week. I hope they have some answers and treatment for me. I've already quit my job, gave up my apartment, and moved back home. This condition has me scared to drive or to go anywhere but worst of all Im scared to lay in my own bed, scared to rest, scared to sleep, scared to read a book. These passive activities seem to trigger the condition. Woe is me. Thanks for all your support.
  2. CagedBird

    trying to move on

    By CagedBird,

    Thursday my dad made me stay home all day. I told him one like that had not happened since I was at work in September so it probably wont happen again for another couple of months but he still wanted me to rest so I did. Yesterday though I had to get out. Laying in bed is the scariest and probably gives me more panic attacks than anything since the "seizures" were always in my sleep and the dizziness always happens when Im laying down on the computer or reading a book.
     
    So I got my dad to drop me off at the gym. I went to Senior Yoga first. The instructor was really nice and he helped me do the poses and told me when to just rest until the next easier pose. It was tougher than I expected! The back of my thighs, abs, back, and arms were feeling the stretches! but I was proud of myself at doing the exercise and using my left arm on the floor without my brace. I think the class will be good for building my confidence into leaning to my weaker side more. I went to a Senior Strength class but it was a little more fast paced ad the instructor did not seem too personable. plus we were in the basketball gym and a lot of the exercises were standing up. so I didnt want to risk falling on that hard floor so I sat out. I met a new friend. His name is Billy. He was really helpful showing my the machines, adjusting them for me, and he even got me a pair of headphones so I could listen to the mini tv on the machines. Such nice people
     
     
    I got a great work out. Later I took a walk through the park with a friend from college. Through all the driving exercising, and everything I did yesterday I felt fine. But not this morning. I woke up begging God to help me and my leg was shaking. I don't remember why. I think I though I was about to have a seizure. Its like my body woke up before my brain or something. Soon I calmed down and started to read a book. Thats when it happened again. Something took over me. My heart started beating fast, I was scared and hot. I thought it could be a seizure so I rolled to my side and called me dad but he did not answer. I stared in space until I felt okay.
     
    Im trying so hard to live a normal life. Im trying to find out what is going on with me. but its really hard. Its hard when all of the doctors are playing a guessing game. Its hard when waking up in the morning feels like waking up from death. Its hard when you live in fear every time you leave the house but your brain mainly only goes crazy when your laying down resting in bed. I just wish I had answers so I could treat this thing and live a semi-normal life
  3. CagedBird

    i just dont understand

    By CagedBird,

    Things were going pretty good. Today I went to the gym and signed up for a membership. Its a gym that the hospital owns so they also have OTs PTs and personal trainers. I especially like that they offer group classes like chair yoga and senior exercise classes so it will be easier for me to keep up with the group. I was having a good day. I treated myself to a restaurant I've never been to for lunch then came home to finish reading a business book.
    and thats when it happened. as i was laying down reading I felt my left arm start to rise up. I tried to push it back down but I knew it was a seizure. I tried to put my book down but tore the page. I tried to yell for help but I guess I was just thinking it and could not talk. It felt like I was dreaming while I was sleep. I was talking to strangers and just random things happening.
     
    Then I realized I was sitting on my bed crying hysterically and my dad and brother were talking to me. I didn't know what was going on and I was terrified. I kept saying "They're going to take my license" which I always say once I realize I've had a seizure. My dad put my shoes on me and decided to take me to the emergency room because my dad says I was staring and my eyes were really wide plus I was really out of it.
     
    Once we got to the emergency room parking lot I started to remember what I wrote in the last paragraph plus the parking lot was full so we went back home. but my dad told me more. He said I walked into the the kitchen and he seen me walking past his room but I was walking strange. Then he heard a boom and he found me laying on the kitchen floor just staring into space and not responding. He said its like I was sleep walking. I don't understand how I got to the kitchen. It is on the other side of the house and I had to step down a step from my hallway then up a step into the kitchen. How did I do all of this without wearing my brace and no memory of it? I guess my dad helped me back to my room. The last time I fell without my brace when I was 14, I sprained my ankle. Im glad I did not sprain it today. My left side is sore but my headache is going away,
     
    My dad does not think I had a seizure and none of the neurologist or ER doctors think what Im having are seizures. I just wish I knew what it was. Now I feel scared to drive, work out at the gym, and take on the responsibility of starting a business which was my only hope after quitting my job. I just dont understand
  4. CagedBird

    The silver lining

    By CagedBird,

    I am feeling good today so decided to write a quick blog and spare you guys the long drawn out entries of the good bad and ugly in my life. For some reason the psychiatrist still has not called to schedule my appointment. I've been calling my neurologist every week for the past month. So today I seen the hematologist. He put me back on iron pills but I don't think I really need them. My hemoglobin is at 11.6 and the normal level is 12. He is going to check my blood for everything and call me if something is wrong. I know I have something going on psychologically but I just wanted to rule out if there is anything else going on. When I was little before we found out about the AVM, my doctor thought I had hypoglycemia. Since my neurologist doesn't think Im having real seizures, I just want to see if there is something else causing the random attacks.
     
    I went to the rec center on Saturday. My friend I've known since my stroke helped me. I walked the treadmill for 20 minutes and she helped me with the big machines. I dont know what they are called. I did the one where you pull the bar down, the one where you pull the bars in, and the one where you push the bars up. My knee was kind of sore after the treadmill. Then I got a spasm on like the inside of my arm so I went home lol. I was glad to have my friend there to help me put my fingers around the bars and to help push until I felt confident for her to let go and let me do it. I was trying to figure out how I can exercise and go to the gym by myself. I know I need to strengthen my triceps and not my biceps but thats about all I know.
     
    Then today I discovered there is a Select Physical Therapy in the same building as my hematologist! Select Physical Therapy was where I went in Charlotte. I had been feeling kind of lost because i dont want to go back to my pessimist pain management doctor who is only going to refer me to the pessimist OTs and PTs at the outpatient rehab at the hospital. But now that I know there is a Select Physical Therapy here I am definitely going to fight to get back in there as soon as my medicaid gets switched over and I get a new PCP.
     
    I went back to the library today and sometimes I really don't miss it. As I dropped books into the drop box, I thought about how I used to have to push that heavy cart outside in the cold and rain grab all of the books, cds, and movies out of one cart put them in the other cart then push the cart back in the library only to take them all out of the cart, check them in one by one, and sort them in the book trucks all with one hand of course. Boy do I not miss that! After the doctor I went out to lunch with my dad. I could never do that in Charlotte. It was nice. I came home to read some more and work on my business plan. I am starting to see the silver lining of me moving back home and I am glad Im not bogged down by depression right now so I can actually feel optimism. i finally have more time to focus on getting my left side better and finding the career for me.
  5. CagedBird

    a new year

    By CagedBird,

    It is always hard to write in this blog. Some days I am feeling so low and other days I feel wonderful. Of course it is easier for me to blog when Im depressed because when everyone is at work too busy to listen to me, the blog is always here for me to vent. Then I try to write at times like this when Im feeling normal so the blog becomes crazy long. Sorry!
     
    I wish I could say 2014 had a great start but sadly i can't. It was January 2 I believe when I had another "attack". I was laying in bed as always and started to feel weird. Although I tried to talk to myself to stay calm and insist that I was not going to have a seizure, I really felt like my body would start jerking and I would fall off the bed any minute. I felt immense fear and wanted to cry. My left arm and leg felt like they were jumping but I could not tell because I was under a blanket. I could not stop moving. Every time it happens I feel like Im drugged up or something like I touch my face move my legs. I just do whatever because its such a horrible feeling and I dont know how to make it go away. My vision became blurry and I felt like i was dreaming. my heart started pounding. I started sweating and I felt nauseous. It felt like my eyes were opened really wide so I closed them and continued to lay down until the feeling went away. It lasted maybe a minute total.
    Im still waiting on the psychologist to set up my appointment. I have scheduled a trip to the hematologist next Monday to check my blood. Im just curious at to if there is something going on in my body and Im actually having panic attacks because I think they are seizures.
     
    Later that day I had a breakdown. I was out of medicine and my doctor kept giving me the run around and putting me on hold. I had been constipated all week and I was just really not feeling well. I was also pretty sad that I had to experience the "seizure" so soon into the new year. I had an attitude which caused me to get into a fuss with my dad which ended in him scolding me for being such a "hateful" person. and I was frustrated that I could not do my own hair which had not been washed in over a month.
    I could not stop crying and wanting to die. I know it was just a bunch of petty things but I just felt so frustrated and wanted everything to go away. I ended up taking 2 norco (the pain pills I got after I got hit by the car.) They made me feel so much better and after my nap, the (psychological) pain was gone. I read a book, made some goals, and felt back to normal. I dont take the pills every day but when I just cant stop thinking about death I take 1 or 2 to help me calm down. They always work.
     
    Other than that I have been enjoying my self. I got a bunch of books from the library to help me find my purpose and maybe start a home business. I love to just get in my car and go. I went to the movies with my cousins on Saturday after finally finding someone to do my hair. Just being out or around family is such a great distraction and makes me appreciate being here and not having to work 40 hours a week just to pay bills and live alone in my 1 bedroom apartment. I also enjoy being able to take my time exercising. I have learned to moved my wrist when turning the door knob and twist my arm a little so my bent finger actually hits the light switch instead of my balled up fist.
    I achieved all of my goals in 2013 (my promotion, got in no car accidents, started using my left hand, got my e-stim unit, got a new brace for my hand and leg, etc). My only goal for 2014 is to continue my 2013 goals. The only difference is instead of going for a promotion, I am taking this free time to really figure out what my purpose is and what I want to do as a career. I love the work from home entrepreneur books. They are very motivating.
  6. CagedBird
    How could I possibly feel sad? I havent had any seizures or nightmares in my sleep. I get out and drive to visit family and friends everyday. I dont have to worry about working 40 hours a week just for all of my money to go to bills. I can go wherever I want, do whatever I want, whenever I want.
     
    But Im still sad. When Im not hanging out with family and friends, I am just sitting in my room. All of my friends work during the day so I have no one to talk to. When Im too tired to go anywhere and have exercised, I get so bored staring at my laptop screen until the battery dies then watch tv until that gets boring then read a book until I cant focus. My brother moved and my dad works a part time driving job and when he is in town he's always out doing something or working on the yard so it is very lonely being here. I try my best to go out as much as possible but by the time everyone is off work, its dark, traffic is crazy and the depression has lessened.
     
    I just feel so worthless. Between Thanksgiving and Christmas, family and friends of family have constantly asked "So what are you doing now that you're back? Do you miss Charlotte? Are you back in school?" I remember my last day at work when I was holding my sadness in the whole day. Then my co-worker asked me what I was going to do when I got back home. "Nothing" I replied trying to swallow the lump in my throat. Are you going to work? No. Going back to school? No. Well what are you going to do?" "Nothing." was my final reply as I buried my head in my arms on the table and cried like a baby.
     
    I know they dont mean any harm. My co-worker did not even know I was quitting so Im sure she was not aware of my medical situation. But here back home my dad must have told everyone I wanted to come back home. He told them I needed a break and was tired of working. It is hard to explain to everyone that:
     
    I had seizures. No one could understand why. I got hit by a car. My work performance dropped. I got my medication increased and new medications that made me dizzy and tired. After having a seizure at work I started having more anxiety attacks that I would have another. I was scared to take the bus after getting hit as a pedestrian but scared to drive everywhere not knowing when the seizures would occur. It wasnt safe for me to continue living by myself with the seizures since I would fall off my bed in my sleep and could fall just walking around at any time and have a seizure. My performance was dropping so much at work but I could not quit because then I would have no money to pay bills. So I moved back home.
     
    Yeah I guess it is easier for my dad to just say I got tired and wanted to come home.
    It just makes me feel like such a bum. Everyone is working and married with kids and living a normal life. I graduated college with a perfect GPA, got a Army civilian medal of achievement, and got promoted after only 6 months at my first real job but nobody cares. All of my accomplishments feel pointless. Im not doing anything with my life. I try to make plans for the future but even when things were perfect in Charlotte the seizures ruined everything. Its like my cousin with sickle cell. Even though she looks healthy and she wants to accomplish goals, she cant stop her body from getting sick. I just feel like whats the point in me being here. Why did God bring me back here with no plan or purpose? Laying in bed feels like Im just wasting my time when I could be working on something amazing. but what? I dont know what I want to do with my life. I worked so hard interning for the Army's recruitment program for students with disabilities. but all my hard work was for nothing since they are on a hiring freeze.
     
    When Im alone and have no one to talk to, I cant block out these thoughts and I just need something to make me feel happy. I eat sweets, I listen to music, I try to find something funny on tv, any form of entertainment, but sometimes I just cant make the feeling go away. I wish the psychologist would hurry up and schedule my appointment. I feel like I can only feel 2 extremes: 1.) happiness where I feel like Im dreaming and Im having so much fun until I become aware then have to calm myself down because I think Im going to have a seizure or 2.) a heaviness a sadness where I feel like all good things have come to an end and Im just wasting away being here so I might as well die.
  7. CagedBird

    what just happened

    By CagedBird,

    I was laying in bed looking at my laptop when I started to get a weird feeling. I immediately started to pray out loud. As I prayed I tried to breathe slowly to calm myself down thinking maybe its just a panic attack. but no, it wasnt. Everything became blurry. I let my laptop slide off my lap onto the bed. I reached for my phone but I was so nauseous that I thought I might throw up if I tried to call my dad. Im home by myself. I looked at my bedroom door but it was just blurry. I lay back down and just held my head. My limbs were trembling. It felt like I was not in control of my body. I just closed my eyes until I felt normal again. I just touched the left side of my face and felt a tear. Did I have a seizure?
     
    Lastnight I was in the kitchen drinking a soda. I got up to throw the bottle away but before I could stand, I felt weird. All I could do was stare. I was aware of everything going on around me and I even read a text that I got on my phone but I was afraid to stand up. I did feel a tingling in my left foot. I had to look at it to know that it was there. It like I became aware that my left side is still partially paralyzed. I took some deep breaths and when I felt okay, I got up, threw my trash away and came to my room to talk on the phone. No nausea, no shaking, no blurred vision. Was this just dizziness from my medicine? A panic attack?
     
    I was going to ween myself down on the keppra back to what i was on before but like i said in my other entry, I am afraid I will have a grand mal so I have not changed back. I am still taking the 1000 mg in the morning and 1000 at night. I looked up panic attacks and was convinced that majority of the time I am just having a panic or anxiety attack when I randomly feel dizzy then it goes away. My neurologist is convinced that I am not having seizures at all and everything is psychological.
    I know I have anxiety, depression, and parasomnias but its like every situation is different. Sometimes I can take deep breaths and Im fine. sometimes I cant talk at all. Sometimes I feel like Im moving in slow motion, sometimes I wake up feeling like Ive been fighting and my limbs have been all twisted up, sometimes I feel tingling in my limbs, sometime I have spasms and jerks. Sometimes my heart beats extremely fast. Sometimes it beats so slow I think im going to pass out. Sometimes I stare into space. Sometimes I cant open my eyes. Sometimes I fall asleep. sometimes I stay conscious.
     
    Its all very frustrating because my neurologist says when you have a seizure you dont see it coming. but for me i nearly always see it coming. If Im sleeping, it wakes me up and happens. When Im awake I immediately break my focus and do something to stop it from happening. I guess my neurologist think this is just anxiety since I feel it coming but I think its more.
     
    (by the way, I had just eaten an egg white sandwich with cheddar spinach and tomatoes then took my medicine before this happened so there was plenty of protein (Im vegetarian) and medicine in my system before this happened.)
  8. CagedBird

    Grateful

    By CagedBird,

    I woke up yesterday morning, fell back asleep despite my fear, and woke up again. No nightmares! I woke up Thursday morning and this morning. No seizures! Its such a blessing to just get a good nights rest. Every morning that I wake up and realize I didnt have any parasomnias or seizures, Im just so happy.
     
    No accidents
    I am also grateful for God keeping me safe when I drive. I did not drive much when I lived here before. As some of you know I just got my license 2 years ago and got in 2 accidents the first year, then an accident last year. When I lived here before I was either only driving back and forth to work because I was scared to go anywhere else or I was riding with someone else after totaling my first 2 cars. So even though I got a lot of experience living in Charlotte, I am learning the Fayetteville roads all over. Although its a smaller city, it is a lot of traffic and where I live there are not many street lights so driving can be very scary especially at night. But Im grateful that December 5th marked a whole year I have not got in a car accident. Its a lot to be thankful for considering I've done all of my driving this past year as a newcomer and inexperienced driver in Charlotte (the largest city in NC). I just pray God continues to protect me because Fayetteville has grown so much because of Ft. Bragg but I dont want to fear driving.
     
    No seizures
    I am not worried about the seizures right now. Today I was in Wal Mart with my mom and I just felt weak, dizzy, light headed, and tired. My mouth was so dry and I kept feeling dizzy. Maybe the doctor is right and I do have anxiety attacks. As soon as we left the checkout station and headed to the car I felt fine. I know the increase in keppra has affected my mood a lot. I've already blogged about the mood changes but right now I think Im going to keep taking it and maybe the side effects will wear off. I just dont want to risk having a seizure again if I go back to the old dosage and so far I have not had any seizures (only nightmares I guess and anxiety attacks) since being on the newest dosage. Even though I remember having the staring ones when I woke up a few times, I have not had any grand mals that had me waking up on the floor or waking up my body sore like Ive been fighting all night.(These were happening on the lower dosage). I hope working with the psychologist can help the anxiety, parasomnias, and mood changes because right now I feel safer on the higher dosage when I look back and compare to how things were on the lower dosage.
     
    Using my left hand
    About a month ago, I made a post in lighter sides of stroke about making progress. I feel like my progress with my hand is the one thing keeping me from being extremely depressed. This year I have made so much progress! I am doing my exercises every morning, wearing the splint everyday, and using my hand more and more. Today I hugged both of my parents and squeezed them using both arms! I had not done that in years. I heard my dad bragging on the phone to a relative about me explaining how I use my hand a lot more now. I was feeling confident so I showed him what else I could do. I wrapped my fingers around the heavy wooden kitchen chair and using only my left arm, pulled the chair out from the table! My mom says my arm is getting bigger too. She said one time it was looking smaller than my other arm. She also noticed how my fingers do not dig into my palms like they used too. I am so very grateful for this blessing. My next goal is to get better at opening the door without using my good hand. I also bought a 2 pound weight and plan to mimic drinking from a glass so I can begin drinking from my water bottle using my left hand. All Ive wanted since 2001 was to use my left hand so I thank God even though problems have been added in my life, instead of dwelling on what I cant do, now I can look at the list of things i CAN do that I couldnt do before.
     
    Keeping my faith
    By the way, I began attending a Catholic church and I love it. Nothing at all against Protestants. I am not catholic. It just feels good to be able to worship through prayer and song without someone yelling at me to clap if I love the Lord or shout if I want my blessing or do a praise dance if I have anything to be thankful for. Most of all I dont have anyone telling me Im not praising God enough, I dont have enough faith, or an evangelical pastor pushing me to the floor to rebuke the evil spirits in me. I finally dont feel condemned or guilty in church.
     
    Sorry this is so long. I am wide awake from coffee and just wanted to write while my mood is good
  9. CagedBird

    No answers

    By CagedBird,

    Right now I am just mad. I just left the neurologist. I asked him about the ketogenic diet and modified Atkins diet. He didnt have a clue what I was talking about. When I learned that the ketogenic diet is high in fats and low in carbs, I thought well maybe my seizures came back because I dont eat a lot of fats. Last year I quit eating all meats except seafood. I also do not eat butter or drink whole milk. If I cook I use margarine and on the rare ocassion that I eat cereal I drink almond milk. Not saying Im right but just saying if the seizures came back after all these years and the only thing that has changed is my diet, maybe it is my diet triggering the seizures.
     
    I know caffeine triggers it. I stopped drinking sodas when I moved on my own. I only drank water so one day when I accidentally made my coffee too strong, I felt "high" and dizzy. Then this year I had 2 mocha lattes with whipped cream the day I had the grand mal at work. Like I said, I asked the neuro but he had no clue. He did not disprove my theory though. I set up an appointment with the hematologist for next month to check my blood (minerals/vitamins) levels. I know the ketogenic diet works best in children and I do not have the patience to follow the exact diet but if going back to eating more fats and less carbs will help the seizures, Im ready.
     
    So I told the neuro how the increase in medicine was making me dizzy and really tired. I also told him about the nightmares. I had some very vivid ones this morning. I woke up around 5am then fell back asleep. I was having seizures and screaming for my daddy. I just kept screaming his name over and over. At one point I did not know if the seizures stopped so I tried to straighten my arm against the bed and it started shaking so I knew I was still having the seizures screaming daddy as loud as I could wondering why he had not come into my room yet. Then I opened my eyes and realized it was just nightmares.
     
    I told the neuro about what happened last Friday as well. He does not think that was a seizure. He says seizures are only when you cant feel it coming and since my heart was beating fast that was probably just an anxiety attack. SO since he doesnt think Im really having seizures and taking 2000 mg of keppra a day is only making me tired and dizzy, he decreased me back to 500 mg twice a day. My dad does not want me to get addicted to the klonapin so he decreased that as well from .5 to .25. After he wrote the prescriptions, he told me to watch out for more seizures since he was decreasing the medicines. I said well why did you decrease it if it can make me have more seizures? And he said well you said it was making you tired and not working.
     
    Im just. I dont even know. He tells me Im not having seizures then tells me to watch out for seizures because hes going to decrease the medication AFTER he just doubled it a month ago. He doesnt know what to do with me so hes referring me to an epileptologist at Duke epilepsy center. But wait, he just said Im having anxiety attacks and not seizures? Exactly. It doesnt make sense!
     
    So he also referred me to a psychologist for the nightmares and depression. I wonder what the psychologist is going to say. I hope they can prescribe me something to numb all this anger and pain I get when I cant understand why I have to go through all this.
  10. CagedBird

    another poem

    By CagedBird,

    i just felt like writing. After 1 christian telling me i put too much faith in medicine and not enough in God, I have been trying to be as spiritual as I can praying and reading the Bible. Then my co-worker who is a minister told me the 1 christian was wrong. It is not my fault. She told me to go to church and get someone to cast the demons out of me. Lastnight my cousin invited me to her church but I told her I did not want to go back because Im tired of people telling me Im not getting healed because Im not praising God or feeling like it must be demons in me since Im not running around the church shouting and jumping and dancing.
     
    Lastnight a sudden sadness came over me. I wept. I just felt worthless all of a sudden. Earlier in the day I felt like I was "living the life". Wake up whenever I feel like it, lay in bed all day if I feel like it, no house bills to pay, no more getting off work at 8:00 at night. I can wake up, shower, have breakfast, say my prayers, read my scriptures, exercise, and do everything on my time.
    Then lastnight after I took my medicine (2 keppra, 2 baclofen, 1 clonazepam) I got ready to become a zombie and get right back in bed. Thats when I wrote this
     
    Too young to have 16 surgeries on the brain
    an old woman's energy in a young woman's frame
    "But you're so young!" people respond when I say i had a stroke.
    "That was 12 years ago!" I brag as if Im telling some twisted joke.
    "The malformation may burst if we dont operate."
    "Well lets set this up before its too late."
    The exchange between the doctors and my parents that day
    as we unknowingly prepared for my life to never be the same
    In an effort to remove the malformation, they ruptured my brain,
    scarred the tissues, made me lame.
    Instead of stopping the seizures, they caused more,
    damaging my brain more than it was before.
    Spent my school days in a hospital bed
    bought an old lady wig when they shaved my head.
    Came from a wheelchair to a cane and now just a brace.
    but physical disabilities is not all I've had to face.
    Stroke affects your mind, body, and soul
    as it removes or damages half of your whole.
    Takes away your pleasures, all you can feel is pain
    takes away your happiness yet causes you to laugh like your insane.
    Makes you break down in tears when you werent even sad
    then uses the opportunity to remind you of what you had:
    A normal life, everything was okay,
    no medications, therapies, and appointments to fill your day.
    As I reminisce I try to remember what it was like
    to play tennis with my neighbor then ride my bike,
    do simple things like wash my hands and my hair.
    I could see in my left visual field before but now nothings there.
    The surgeons were supposed to make me better but made me worse
    yet I am supposed to be thankful I rolled home in a wheelchair instead of a hearse.
    So much to go through but I didnt let it limit me,
    graduated high school and college with the help of God's divinity,
    practiced driving with my new license for a year,
    then moved away from home and started my career.
    Life was going great living the young professional's dream
    I even started using my weak side to do things.
    showing the public I dont let disabilities stand in my way
    until I had to give it all up one day.
    a seizure at work that brought me to the floor,
    sudden anxiety attacks I wasnt having before.
    Seizures in the night and parasomnias during naps
    still i tried to withstand these attacks.
    People still think I was too young to have a stroke and 16 surgeries on the brain
    but 12 years later i still feel too young to be bearing this pain
  11. CagedBird

    the bad and the good

    By CagedBird,

    I have lived with my dad pretty much since I had the cane back in 2003 so he is used to dashing into my room or calling out my name anytime he hears a bump. back then the issue was me falling since I could not walk as well as I do now. We put the bed back up against the wall so he can hear if I hit it during my sleep. (I still remember him holding me on my side in 2005 because he heard me hit the wall having a seizure.)
     
    I asked my brother if he heard me call for help during the seizure Friday but he said he was sleeping. He works 3rd shift so hes usually sleep during the day. Though my dad is retired now, he works part time and he spends a lot of time outside messing with the yard. My brother told my dad to get me a life alert or something so I can let someone know when it happens. One thing I do now is leave my door unlocked. I used to lock it for privacy before but now in the bathroom and in my room I leave it unlocked just incase I do fall.
     
    Yesterday I had a horrible case of parasomnia. I woke up around 5am but was still sleepy but was going to go to early church service because I was afraid to fall back asleep. Unfortunately I could not fight the sleep though it wanted to fight me. Repeatedly I was screaming at the top of my lungs for help. It felt like someone was squeezing my whole body all over and choking me. At one point I was using all of my strength to push something. Finally I woke up and I felt fine. My friend I used to work with is a minister so she prayed with me lastnight because she believes it is demons attacking me.
     
    Her prayers worked. I slept good, woke up, and slept some more. No seizures no nightmares. Unfortunately I have had a headache all day My mom gave me some bayer chewables so I hope that helps. Im going to the neurologist on Wednesday. Still deciding on getting the VNS. Its just rather frustrating because Im taking the clonazepam and still having parasomnia and taking 2000 mg a day of keppra and still having seizures.I just pray God will take away the suffering.
     
    I do want to say life has been good since I moved here. I spent the day with my mom yesterday. We went to spoken word poetry night at the coffee shop and it was fun yet relaxing. My mom drove since it was dark. My mom carried my hot chocolate as I took my time up the steps. Today I made some calls to get my SSDI reinstated and get my Medicaid switched over. It feels good to be able to take my time and do whatever I like with my day and have my family to help with anything.
  12. CagedBird

    epilepsy

    By CagedBird,

    I just had another seizure. After taking my medicine I tried watching tv and being on the internet but I was just so tired I dosed off with the tv on. A few minutes later I found myself waking up slowly like I didn't know what was happening. I thought I was going to throw up, my head hurt, and my heart was beating so fast it hurt too. I thought about calling my dad but I couldnt remember how to use the phone. I tried yelling out his name but it came as a whisper. I was scared. Finally it ended, I turned the tv off, and I just lay here crying. My head still hurts. It was like this uncontrollable fear making me cry. I said in my head "Im scared" so I decided to blog.
     
    Sunday I had a somewhat similar episode. First after taking my medicine I was really moody and irritable. I was not mad at anything, I was just acting really mean like I had no patience or compassion. When I got back to my apartment I was so tired I took a nap. During the nap I had a nightmare. I was at work in the breakroom and a co-worker walked in. I began to have a seizure but he was fixing his lunch and did not notice. I tried to tell him verbally but I couldn't say anything. So I tried falling out of my chair to get his attention but I was scared to fall. As I felt myself sliding off of the chair I woke up.
     
    I moved back home on Wednesday. As my brother and dad moved my stuff I felt like I was in a dream. There was a lot going on around me but I could not comprehend it. My brother started talking to me and I heard him but it just did not seem real unless I looked right at him to understand what he was saying to me. Its hard to explain and I dont remember when the feeling went away but it did.
     
    So now I am laying here frustrated. I celebrated Thanksgiving with my family yesterday and although I cried at work on my last day, I have been fairly optimistic since moving back home. I did not cry during the move or get sad since I been home. I've just been relaxing and thinking about what to do with my life next. I guess I will go ahead and get the VNS therapy. I just want to live a normal life. Thank you all for your support in the comments.
  13. CagedBird

    At home

    By CagedBird,

    I put in my resignation letter. It was very hard and I cried many nights but I felt like I needed to do it. Sunday I remember waking up at 3am feeling like something was wrong (seizure). My heart was beating fast, I had a headache, I could hear myself breathing really loud, the thoughts in my head were really loud and my throat was burning like I was going to throw up. Next thing I knew it was 7:30 and I was waking up getting ready for work. I felt fine but around 4:30 that evening at work I started feeling weird again. I tried putting my head down, closing my eyes, etc but I was working the front desk so I had to help customers. A coworker came up to the desk and asked my workmate a question. As I was looking at her it felt like I was about to have a seizure. I quickly looked away and tried to slow my breathing back down and do something on the computer to make me feel normal.
     
    Wednesday night my friend stayed the night with me. I was upset about putting in my resignation letter and didnt want to be alone. I slept on my right side close to the wall while he slept next to me close to the edge. Laying on my right side as I was sleeping it felt like my body was being pushed back. I tried to let him know I was having a seizure but I could not talk. To make it worse I could not get his attention since I was laying on my right side and could not touch him with my left hand. I continued to tried to talk until I heard a yell finally come out of my mouth...
     
    Suddenly he was walking away. (I guess I was dreaming now). I got up to shut the door behind him but I heard a knock. I peaked through and seen a big woman in a yellow shirt. I told her she could not come in but she began pushing on the door trying to get in so I pushed back. Then I noticed another woman standing next to her. She began grabbing my head and pushing me so I started pushing her forehead back with all of my strength...
     
    Then I woke up. I told my friend "I think I just had a seizure". I guess he could not understand me or was half sleep because he began asking me if I was having a seizure, what happened, if i was okay, etc. I began telling him what happened. I still had a headache so I know it wasnt all a dream but as I was explaining the dream suddenly I wasnt talking out loud anymore. I was explaining everything but my voice was in my head. I realized I was sleep and could not wake myself up. It seemed like it took forever for me to stop talking in my head and wake myself up.
     
    According to him he did not feel me having a seizure behind him and did not hear me yell out. I dont know if this was just a dream or if it really happened and he was just sleep and didnt notice. (My other friend didnt notice me have a seizure and fall off the bed back in June). I asked him if I told him about the seizure and dream and he said I was talkin and just stopped (guess this is when I fell back asleep). Im glad I had someone there with me to tell me some of what happened and possibly kept me from falling off the bed
     
    SO I decided it was time to call it quits. My last official day of work is next Tuesday. Im moving home Wednesday. I thought things would get better but I just cannot continue to work in the fast pace rotating shift job I had. I hate to give it up but I knew my performance was going down and I hated the flashes of dizziness, anxiety attacks, whatever I was having. My supervisor was also concerned about me falling and hitting my head or having a seizure in the back workroom when no one is around.
    I also thought about the time I had a seizure at home and fell off the toilet and sprang my ankle 10 years ago. Luckily one of my brothers heard me and broke the lock on the door and called the ambulance. If this happened to me in my apartment I would just be stuck on the floor seizing. Then be out of work since falling will sprang my left ankle and I cannot use crutches.
     
    If the seizures stopped and dizziness was not as frequent, I wouldve tried to hang in there but I felt like things were still up in the air. No one still knows whats triggering the seizures or how to stop them and I dont want to take any chances. This blog is getting long so I will probably write again after I officially move out of my apartment next week.
  14. CagedBird
    No more therapy. Wednesday was my last day. But I have everything I need. I have new exercises, my old ones from 2007, my mirror box, my e-stim unit, and my brace and splint. I have been exercising everyday since my last day. I don't want to waste all that progress. It feels so great when I use my left hand to do things. While at the doctor, I told my dad I could open the door. We were in the room waiting for the doctor. He didnt believe me but I did it. He was like when did you learn how to do that? I just smiled
     
    I went to my neurologist in Fayetteville last week. I decided not to start that new medicine the neurologist here in Charlotte wanted to put me on. It had too many scary side effects. My neurologist in Fayetteville did want to increase my dosage again though. I dont remember the actual dosage but he increased it from the 750 twice a day. I have not started it yet but Im going to pick it up after I leave the library.
    Im kinda scared to start it because of my mood issues and the keppra side effects on my mood. I had a break down last Friday. Like I just cried for 3 hours straight. I could not get out of bed. I called out of work and that made me feel worse to know that I disappointed my supervisor by calling out from work. I literally just wanted to lay there and die. I felt such hatred for myself and thinking about my situation just made it worse.
     
    I decided I want to go home. I still dont know when though. I will probably have to pay the remainder of my lease and lose out on my deposit. With no income (except maybe SSDI) I will have no choice but to live with my dad and Im not even sure if SSDI would cover rent, my car payment, AND my car insurance which is super high because of my 3 accidents in 2 years.
     
    I started job hunting in Fayetteville but Im not sure I want to go straight back to working full time and I cant find anything part time. I would like time to just sit home and exercise and maybe work on my motivational speaking (which I get paid for most of the time). Im just scared to put in my 2 weeks notice. There is a trailer right across the street from my dad's house that will be available the end of this month. If I could have my way I would quit my job and move there and live off my SSDI that way I would still have my independence, still have time to exercise, and my dad would be less than 5 minutes away. My lease is really the main thing stopping me right now and my fear of letting my supervisor down by quitting after she just promoted me in July and gave me a raise in September.
     
    I am going to go home next weekend. Im off Friday-Sunday so that will be a good vacation. I really enjoyed going home last week.
  15. CagedBird

    i want to go home

    By CagedBird,

    I just left the neurologist office. He said I had a small amount of discharge one night that could have turned into a seizure. He was really concerned that I had the big one at work the day before the EEG. He said the discharge in my brain came from the area where my stroke was so I guess its just post stroke seizures. The nighttime seizure medicine they started me on has been working wonderfully though. I dont wake up in the middle of the night anymore (unless the hand splint is bothering me) and I havent had any nightmares or parasomnia.
     
    The neurologist gave me a few options. Start a new medicine and ween me off keppra, increase the keppra again, or just stay like I am. I definitely did not want an increase in keppra since it really affects my mood so I opted for the new medicine. That means I will be taking THREE seizure medicines.
     
    OT has been good. I got my own mirror box now and have my exercise plan but I never have anytime to do the exercises. The medicines make me so tired and I work 40 hours a week. I just dont have the energy to do anything. I was disappointed to find out that my OT let me down on the saebo. At first she told me it would be a good resting splint for me but then after she talked to the company she said I might have too much tone and might need to try botox first.
     
    I had been dealing with doctor bills all month. My medicaid was under review and I got no type of notification or or anything so the seizure ER visit, accident ER visit, EEG, and doctor visits were billed to me. Very frustrating calling each hospital to clear it up. I also had an incident one night I could not find my baclofen prescription, I was completely out, and the pharmacist would not fill it. I had to rush home and look everywhere. Then a week later I got stress because I could not find my new seizure medicine and was completely out. I looked everywhere and found it..in the trash. I had thrown it away on accident.
     
    I dont want to move back home but I do want to move back home. I really dont like working full time or my job. Although I work hard, I just really wish I had more free time and I feel like working full time and doing everything on my own here is just too stressful. Now the doctor wants to put me on this new medicine. What if I have another seizure at work? I am afraid to drive now. but as I was walking to the library to type this I stood there for at least 5 straight minutes and the walk sign never came up so I just went when the light turned green but it turned red before I made it across the street. Luckily the cars waited for me to finish crossing so I didnt get hit this time.
     
    I just dont want to be here. It was dangerous enough for me to be driving with the limited vision then in this big city there are always accidents, roads closed, and detours even though I avoid the interstate. Now Im going to be put on this new seizure medicine and who knows how it will make me feel. I get anxiety attacks everytime I get ready to cross a street and my leg hurts so bad from this new brace, the accident, and the extra walking I do to minimize crossing the street to get to bus stops. Plus taking the bus turns my 15 minute commute to work into a hour and a half so Im waking up earlier and getting home later making me more tired and giving me less time to get things done at home.
     
    I love my independence. I love coming home having privacy, driving my cute little car wherever I want when I feel like going somewhere. but im just tired. tired of having to do everything for myself. tired of working to exhaustion then my supervisor still complains. then its like if I cant drive and cant take the bus I will have to go back to using the special transportation bus which is super unreliable and never on time.
     
    I am going home this weekend for an appointment to update my neurologist in Fayetteville. I dont want to say I give up. I just need a break. I dont know. Maybe Im just upset right now. just needed to vent. Thanks for your comments. I have been generally happy and I am thankful for all that I have and have accomplished. I just want a break from the stress without feeling like Im doomed to give up on having a meaningful life. If only I could work from home
  16. CagedBird

    my stroke anniversary

    By CagedBird,

    Thanks everyone for your comments and concern. Im feeling better and am waiting on my lawyer to start the case. I recently disconnected my cable and internet so I am typing this in the last 5 minutes of my lunch break at work. As some of you know my stroke anniversary was yesterday. 10-18-01 was the day I went in to have the angiogram for my AVM and woke up days later with a stroke. I just wanted to let you guys know I have not been sad and depressed this anniversary. I went to church on Sunday and a minister prophesied to me that my arm would start to straighten out. I had the dream I was clapping my hands Monday night after church. I did my evaluation on Wednesday and I am making progress in OT so I get a few more weeks. I went back to church for revival Thursday and Friday night. I am really just glad to be alive, glad God woke me up this morning, and glad I can say I made more progress this past year than I have in the last 12.
  17. CagedBird

    i got hit by a van

    By CagedBird,

    I decided to return back to work this week so I bought a bus pass instead of driving. I was about to cross the street at the cross walk. It said walk. I took a few seconds to look to my left and right to make sure no one was making right or left turns and began to walk with 12 seconds left. As soon as I began to start walking I seen a big van approaching me on my left side. "WAIT!" I screamed. but it was too late. I fell over to my right side in the road then rolled over in agony. The driver got out and called 911 and witnesses began to direct traffic and see if I was okay.
     
    I got all my clothes cut off and was rushed to the ER. Fortunately my CT scan didnt show any internal bleeding and my x-rays only showed an old fracture in my lower back . I could not move or walk at first. It hurt to breathe. My lower back, hips, and left leg felt horrible but after the pain pills and morphine I didnt care about the pain. It sucked because I couldnt eat anything all day yesterday until around 8pm and they'd been giving me meds all day on an empty stomach so my stomach has been killing me all day today.
     
    After they discharged me, I came back to Fayetteville with my dad so he could look out for me. It still hurts to move and I cant bend or lift more than 10 pounds. I think I am just going to move back here to Fayetteville. I dont understand why so much keeps happening to me. All Im trying to do is live my life and not let everything stop me. I wasnt jaywalking trying to go somewhere inappropriate. I was at a cross walk trying to make it to work. I was trying to take the safe route by NOT driving. It just doesnt make sense like God is just picking on me.
     
    I have nothing tying me down to charlotte like close friends. I have no family there. Im not crazy about my job. and it seems like everything is hassle when it comes to going out. I can drive but traffic drivers/pedestrians are crazy there. I can take the special transportation van but it was always late picking me up and dropping me off. And taking the city bus is the cheapest "safest" option but ever since I moved my bus routes near my apartment are closer to uptown and longer and more confusing. I either end up walking a long ways to/from my apartment to catch the main routes or standing outside the street in the dark waiting for the community bus that stops right in front of my apartment but only makes stops every hour.
     
    If I move back here to fayetteville I will keep my car and try to be roommates with my cousin/bestfriend that way I will still feel independent, wont be moving back to my sad depressing bedroom in my dads house, and will have family to help.
     
    The wonderful OT is the main thing I will miss about charlotte but I have my e-stim, have my splints, have my exercises, and if I quit my job and go back on disability I will have time to really exercise. As far as my job I hate to quit after just getting promoted but I have been missing so much time from work and I feel like my supervisors dont want me there anymore because they keep trying to convince me stress from the job is whats causing the seizures although I keep telling them Ive been in more stressful situations (COLLEGE) and would usually only seizure on my days off from work when I been laying in bed all day.
     
    Well I will let you guys know how things go and how the case goes if I can sue the driver that hit me. Im just trying to be strong
  18. CagedBird

    home from the hospital

    By CagedBird,

    First of all THANK YOU all so much. Your comments and support really meant a lot to me. You guys really knew just what to say. Well the good news is I was discharged from the hospital so I am FREE AT LAST! no more electrodes stuck to my head, no more iv in my arm, no more confined to the hospital bed and calling the nurse to help me to the bathroom. Being back in the hospital was not a good feeling. I really had some break downs in there. Like what if I have to have brain surgery for them to stop the seizures? What if I have to get my hair cut off again? It was just like I was 12 years old again, my mom sleeping in the pull out chair next to me and helping me with my food. ...
    Wow I just got de ja vu. It was like de ja vu of me having a seizure a long time ago as a kid. Its crazy my mind went back to that same time and place like I could see it just now. very weird....
     
    Anyway so yeah the good news is Im back home (still in charlotte). I decided to just buy a bus pass for the month instead of driving for a while. My dad is going to put my bed against the wall so I wont fall between the crack. Also good news is I am going to keep getting my disability money since Im in a grace period so even though I had to take 2 weeks off from work I should be able to pay my bills this month and I got family medical leave from work so I should still have a job when I go back.
     
    The bad news is I did not have a seizure the whole time I was in the hospital. I did feel light headed and dizzy at times but I might can just blame that on my head being wrapped and taped in electrodes and me laying in bed for 5 days. I did have a couple jerks in my sleep the doctor noted. During these times he would see a discharge from my brain meaning it couldve been a spark of a seizure. I wish he could've actually observed one and seen where they are coming from in my brain because now all we have to go on is theory and his opinion from prior experience.
     
    We did everything to make me have a seizure. They took me off my keppra on Tuesday, flashed lights in my eyes for 3 minutes everyday, and had me blow into a pinwheel for 3 minutes everyday but nope no seizure. When I would jerk in my sleep and during naps, this was all the doctor had to go by. He gave me klonopin in addition to my regular keppra. I tried the klonopin last night. It was great. It knocked me out and I was not even scared to fall sleep. I hope it has the same affect tonight!
     
    I asked if my brain rewiring (using my left hand more) could be triggering the seizures. Each time I have the seizures the first thing that happens is my left arm begins to jerk. (This did not used to happen.) Since I have seizure activity where I had the brain damage, the doctor believes it is certainly possible. But he told me that doesnt mean I should stop using my left side. We just have to figure out the best medications that will fight the seizure activity. Considering we did everything including taking me off my keppra for 5 days, and I still had no seizure, my doctor said I have a low tendency for seizures. This is good news but as I said before I still wish I couldve had at least one. I feel like I still have no answers and will just have to hope for the best. Well Im about to shower now I love you guys
  19. CagedBird
    I was feeling kind of weird at work. I'd had a mocha coffee before work so I felt kind of good when I got there. I guess the caffeine put me in a good mood and I just felt relaxed and at peace. Then I guess it wore off and I began to feel tired and light headed. I was working sitting at the desk mostly but when I had to walk around to gather some books I started to feel more strange. I couldn't tell if I was just getting tired or if I was going to have another seizure or if I was just feeling uneasy because I went back to wearing my old brace today after wearing my new brace for the last week and I had on flats with no socks so my feet were sliding and making me feel off balance.
     
    I was sitting in the workroom next to my co-worker and I started to feel really weird and dizzy like I'd just woke up. I tried to put my head down in my arms but it felt like my left arm was moving uncontrollable. I tried to say "I'm having a seizure." My co-worker said "oh no. she's having a seizure." I began to slide out of the chair and she asked my supervisor what side to lay me on. Then I opened my eyes and I was crying uncontrollably. The EMTs were in my face asking me questions. My coworker was rubbing my back telling me not to cry. I was still out of it so they took me to the emergency room.
     
    I kept randomly feeling weird again like earlier this morning when I'd felt like I was in a trance or something sometimes. Besides my heart rate being kinda high from the crying, they said my bloodwork and urine was okay. They let my neurologist know I had the seizure but Im still scheduled to have my EEG tomorrow. My coworker told the doctor during the seizure I was flinging my arms and legs, grunting, and I bit my tongue. I dont know what triggered the seizure. Maybe I had too much caffeine. Maybe I was so stressed about having a seizure tomorrow during the sleep study that I made it happen today.
     
    I just felt like giving up on life. I finally have everything I want and need and now Im having unexplainable seizures for the first time since 2005. I wonder if my left side getting better has anything to do with it. I kept feeling like my left arm was still moving uncontrollably when I was waiting to be discharged from the hospital. I kept feeling random tingling in my arm and fingers. I dont know. Its almost like my brain is rewiring itself to use my left side but getting confused thus having the seizures.
     
    It seems like the seizures have happened more frequently. I was good for a month. But this is the 3rd seizure in the past 2 week. Last saturday I didnt have a seizure but I remember waking up and feeling relieved that I didnt have one in my sleep then as I was looking at the clock I started to feel nauseous and dizzy. I started to scream in my head "Jesus help me. Somebody please. Anybody help me." I could hear my screams in my head but its almost like I was still dreaming. After I stopped screaming and talking in my head I looked at the clock and an hour had passed.
     
    Part of me just feels like quitting my job, selling the car since they will probably take my license once they find out about the seizures, and moving back home since no one thinks its safe for me to live here by myself. I will keep you guys posted on how the sleep study goes.
  20. CagedBird

    Another seizure :(

    By CagedBird,

    My brain is in a fog right now. I cant remember what I did yesterday. Well yesterday (Friday morning) i fell asleep around 1am and woke up around 3am. I started reading a book to help my fall back asleep but ended up staying up for another hour and a half or 2 hours. As I was falling back asleep i decided to lay on my left side. Im usually on my left side or back when I have the seizures in my sleep. So as I was falling asleep I started feeling like I couldnt move. It like a force was holding my arms down and I was trying to fight it. I also heard screams which I guess were my own in my head. Soon I fell back asleep though. I am guessing that was just parasomnia because when I woke up I felt fine and felt fine all day yesterday.
     
    So lastnight I was exhausted. I did not make anything for dinner but throughout the day I'd had a veggie sub, chips, water, and fruit salad with apples walnuts and dried cranberries. I think I had a apple for breakfast. Either way my diet isnt supposed to have an affect on my seizure medicine so I dont know why I had a seizure lastnight.
     
    I woke up this morning reaching for my phone on my nightstand but i couldnt find it. It was dark so I began reaching for the lamp but I could not feel that either. I felt to my left and wondered what the big object was. I thought it was my covers bunched together until I realized it was the bed. I was on the floor. I tried to get up but my left (weak) ankle hurted too bad. I always keep books on the floor next to my bed since I read at night but about 6 out of 8 of them were on my bed. I dont know how they got there. I couldnt remember if I took my medicine lastnight so I tried scooting to the kitchen but could not get up once I got to my bedroom door.
     
    I called a friend and he is on his way to help me. I might go to the hospital to see if my ankle is sprained. As I was laying here I remembered the seizure. I was laying on my back and it felt like my body was jerking to my left (weak) side. I think I was creaming "no, help me!" but that was probably just my imagination. I dont remember falling off the bed and like I said I didnt even realize I was on the floor until I tried to get up. I have carpet burn on my right knee and right elbow but my left ankle really hurts so Im guessing the seizure was pretty bad. My alarm clock on my nightstand was even flipped upside now.
     
    Sorry I wrote so much. I just like to keep a detailed record of the seizures. I went a whole month without a seizure. I hope I dont go a whole nother one because I really need to have one on the 24th when I get my sleep study done.
    Thanks for the support on my progress using my hand. I really appreciate it
  21. CagedBird

    getting even better :)

    By CagedBird,

    Thanks for the comments on my last blog. I know its only been a few days but I wanted to share my joy (yes joy!) I finally took a bath using my left hand. It was hard to keep the hand towel from unraveling and I still went back and washed all over again using my good hand but Im glad I atleast tried it. I will try again tonight. I also held a water bottle in my left hand and opened it with my good hand without spilling it everywhere. Now I can pretty much get my wrist in neutral position and when I push my wrist back, I can now feel my fingers release! It is hard to explain but basically I am on my way to being able to straighten my wrist and fingers at the same time. My fingers are looser now. Even when I have on my wrist support, my fingers dont curl down to the bottom or middle of my palm anymore. My fingertips stop at the top of my palm now like where the fingers begin. I know pretty soon they wont even be touching my palm anymore
     
    My OT says some of my muscle tendons atrophied so I will probably never be able to bend my wrist all the way back but that sounds like a challenge to me and I am ready for it Today I felt so happy at OT. I was doing my evaluation and she told me to turn my forearm over. I remember I used to always skip that exercise on the sheet when I got my home exercise program years ago when I was doing OT and botox in Fayetteville. But today I tried and I did it! My face really lit up and I even asked her "when did I learn how to do that?" lol Now I just want to do it all day long. This means Im on my way to turning door knobs and drinking from a cup using my left hand. I think Im going to try to add those to my list
     
    Most of all my evaluation went good. I did not understand the measurements but my OT said I have made a lot of progress these last 4 wees so she is going to order another month of therapy for me. Its so hard to believe Im actually doing it, using my left hand, and Im actually getting better. This is all I have ever wanted for the last 12 years. I cant believe its finally happening for me.
     
    I think my body has finally adjusted to the increase in my Keppra in June. I have not had a seizure or nightmare since I seen the neurologist and I havent felt really dizzy in about 2 weeks now. I guess I will still do the sleep study just in case. I just hope they dont have to mess with my medicine. To many good things are happening to me right now. I dont want the uncontrollable sadness to come back.
  22. CagedBird

    Consistency is the key!

    By CagedBird,

    I have pretty good news. I am progressing in therapy. My OT gave me some exercises. The only problem I have is being consistent! I was off work last Monday through Tuesday so I got up each morning and did all of my exercises, 15 minute e-stim sessions twice a day, and wore my splint for about 4 hours. I even fell asleep with my smaller splint on each night. Even though it was on the floor when I woke up, it felt good to know that I can at least fall asleep with that one on. Remember that night years ago I stayed up until 4am trying to fall asleep with the comfy splint on but just could not because it was so uncomfortable? No more! Falling asleep with it on is a step so Im just grateful for that.
     
    Fast forward Wednesday I went to OT before work but did not do my exercises. Thursday I made an attempt. I wore my wrist support all day and did a 15 minute e-stim session during my lunch break. I had OT Friday morning before work and have not exercised since
     
    The issue is work. I have been working everyday, weekends included since Wednesday and I do not get another day off until this Friday. I bring my e-stim unit to work but get distracted or end up doing something else for my last 15 minute of my lunch break.
     
    I had to report 5 new things I started using my left hand to do and I want to share:
    Week 1
    1. turning kitchen faucet on and off (up and down)
    2. Turning bathroom faucet on and off (side to side)
    3. Turning light switches on and off (up and down)
    4. Flushing the toilet (pushing down)
    5. Continuing to hold my toothbrush when I apply toothpaste
     
    Week 2
    1. Reaching down into clothes basket to take out dirty clothes for laundry
    2. Reaching up into dryer to put in and take out clothes
    3. Clean stove top off in circular motion
    4. Close refrigerator door
    5. Reach up into cabinets when getting food
     
    I don't actually move my fingers or my wrist but I think it is good to just remind my arm and shoulder of how to do those movements. Not only have I not moved my arm in these motions in 12 years but I never had to do things like laundry and cleaning before I was 12 so its like teaching my arm new things. A week ago I was so happy and motivated to use my hand and exercise everyday but I just do not have enough time. Its like work takes up my whole day. Some nights I dont leave work until 8:00 pm. I know e-stim only takes 15 minutes and something is better than nothing so I guess I got to start prioritizing it. It just that using my hand takes patience. When Im running late in the morning is easier to just hit the switches, control the faucets, and flush the toilet with my good hand. My OT wanted me to start washing my face and bathing with my left hand but in the mornings Im in a rush and at night Im just ready to hurry up and get in bed.
     
    I am thankful very thankful. I remember when I had no splints, no e-stim, and only got a couple sessions of therapy after painful uneffective botox. Now I have various splints to straighten my wrist, my own e-stim unit to move my fingers whenever I want, and a therapist that actually believes in me and has already helped me reach my goals. I have all of my resources, I just have to make time to use them EVERY DAY. Even though my 12 year stroke anniversary is a month away, I believe I have made more progress this year than ever
  23. CagedBird

    My first road trip

    By CagedBird,

    I drove my first roadtrip and didnt get in an accident! I was so relived Im still alive! My arm was sore from gripping the steering wheel so tight trying to steer straight going 80 mph. As some of you know I don't have my left field vision so merging is pretty scary and I could not really turn all the way around to see what was coming since I was driving so fast so I had to use my mirrors but luckily I only had to merge back onto the interstate 2 or 3 times. One time I had to wait for a big 18 wheeler to pass so I could get behind him then get over again so the big truck wouldnt be blocking the signs I needed to see. It was also scary when I would be in the far left lane next to the median because I felt like if I went to far to the left I would crash into the wall in the median but if I drifted to the right I would side swipe the car next to me. The big 18 wheelers really made me feel cramped but I made it safely so I guess it was all in my head I drove about 370 miles. I went to Raleigh to see a friend then to Fayetteville to pick up my cousin then back to Charlotte. I didnt get to sleep until 3am so I was super tired at work yesterday
     
    My other cousin came up and we went out to dinner lastnight. It felt so good to have my family here and not be here by myself. Since I'd done so much driving and sightseeing I was scared I might have a nightmare or seizure Friday night especially since I did not take my medicine until about 2am but I actually have not had a seizure in 3 weeks since I seen the neurologist. I did have a nightmare that I was having a seizure last week but its like I only panicked for a little bit before I realized I was dreaming so it was not too bad. I am kind of tempted to take a nap and see if I can trigger a seizure but Im off work for the next 3 days so I will just see what happens. (They used to only happen mornings after days off or nights I'd been in bed all day and/or took a nap.
     
    It would be great if the seizures were gone for good but it seems like they happen right when I stop worrying about them and I really want it to happen when I get my EEG so I wish I knew something I could do to trigger it so the neurologist wont try to keep me in the hospital all week trying to make me have a seizure.
     
    Driving was a great distraction and getting back home safely made me feel so glad. I still get depressed at work and hate myself when I make a mistake, people stare, etc and I cried this morning after my family left but to end this on a good note, like I said it felt good to not wallow in pity confusion and sadness on my day off and spend time with my bestfriend
  24. CagedBird

    fighting the monster

    By CagedBird,

    I really do love you guys. Thanks for all of your support. I was able to tell my OT this morning some of the stuff I learn from this board that she had never heard of. I am glad I went to chat lastnight because I was also able to explain to her Im not the ONLY one that just cant sleep with the splint on and if I do manage to fall asleep with it on, I take it off in my sleep or its not on when I wake up. So I really am glad this board is still around.
     
    I wrote a poem on Sunday. I had not wrote one in a while. I cant explain what the monster is. The monster is many different things (a sudden mood change, a feeling of worthlessness, a desire to be dead, etc). The monster pops up when I think Im doing okay and does not leave me alone until it feels like it. I hope the poem will explain how no matter what I try to do, say, or think sometimes I just cant feel happy and it makes me want to cry when I cant even force myself to smile sometimes and dont know why.
     
    The monster in my brain is rearing its ugly head
    Making me feel insane for confining myself to my bed
    “You’re stupid. You’re ugly.” I hear in my ears.
    “No one will ever love you.” it tells my fears.
    “But I’m smart! I’m beautiful!” I tell the demon in my head.
    “But if that were true why do you wish you were dead?”
    “I don’t know. I can’t explain.
    The loneliness? The emptiness? The never-ending pain?”
    One minute I feel alive, the next I wanna die.
    One minute I’m laughing, the next I wanna cry.
    What’s wrong with me? I ask the empty silence.
    Why do I look at peace but only see violence?
    I look at a bright smile but see a hidden frown.
    A newborn baby leads to a casket underground.
    A clear blue sky turns into a rainy night.
    A couple holding hands leads to a violent fight.
    My view only sees through dead rose shaded glasses.
    My failed attempt at joining the rank of the optimistic masses
    I accomplished my goals, I achieved my dreams!
    So why am I still ignorant to what happiness means?
    They say ignorance is bliss but how could this be?
    When your ignorant to happiness what does bliss really mean?
    Audiobooks, affirmations, meditation dvds
    Church, religion, I’ve tried all these things.
    Yet joy is something I cannot find
    When they removed part of my brain I lost my mind
    colorblind...
    I try to see in color but all that appears is black and white
    When depression is the aggressor I am powerless in this fight
    I try to psych myself up and declare I WILL win!
    But then the monster rears its ugly head again…
  25. CagedBird
    I was not trying to be rude. I just felt like my last post was about me expressing myself, my name, how I feel. Some of the comments just were not what I was expecting. I know we are all in this together and I appreciate the support I get from you guys since I dont get it anywhere else. The pep talks just aren't needed sometimes. When my brain chemistry is going wacky and I cant pull myself out of the dumps, I blog/post here because its an outlet for me to express myself when no one else (family) understands but sometimes you guys say the same things I would hear from my family or co-workers people who are on the outside looking in and when my brain chemistry is being wacky it makes it hard for me to really receive that advice as beneficial and sometimes makes me feel worse.
     
    Anyway all is well. Just wanted to clear that up. I appreciate you all and thank you for your support.
     
    Seizures
    I seen the neurologist here on Wednesday. It was perfect because he works in the epilepsy center but he also does sleep medicine. After explaining to the nurse, the resident in training, and the neurologist my whole medical history since I remember the seizures starting in 2nd grade, no one knew what is wrong with me. Its very hard to explain to someone how your brain feels especially when you're sleep half the time you experience it. The neurologist wants to do an EEG. I have to come to the hospital for about 3 days so they can monitor my brain waves while I sleep 2 nights. They are going to cut back my keppra to trigger the seizure (oh joy). I did get a couple questions answered.
     
    Diet does not really affect my body's response to keppra. Some seizure medicines are affected by diet but not keppra. So that explains why nothing happened after I ate a nothing for dinner but had a seizure the morning following the night I went out to the buffet for dinner.
    The dizziness sounds like auras to the neurologist. I heard about these before but have to do more research.
    If I do have any side effects from the keppra it will occur a few hours after taking my medicine (not randomly throughout the day).
    Keppra can worsen depression. Lamictal is a seizure medicine that helps mood. HOWEVER I am pretty sure lamictal is the the seizure medicine my neuro from Fayetteville switched me to when my wbc count was low. Remember the day I got dizzy in the car riding with my mom and couldnt stop crying because I felt like I was in an underwater dream the whole rest of the day? yeah no thanks. I'd rather be depressed than deal with the affects of switching to that medicine again.
    My e-stim machine is not causing the seizures so Im free to go back to doing it twice a day
     
     
    OT
    After I left the epilepsy/sleep center I went to OT. I explained to my new OT the lack of support and pessimism I have gotten from my OT pain management doc and insurance co back home. Hopefully she understands the umportance of keeping me motivated and not putting me down. I got a bit of bad news. She told me some of the contractions in my arm are permanent. The tendons have shortened permanently so my left side will never be like my right side again BUT Im young so I have time to make it better instead of letting it get worse.
     
    I believe moving and getting a fresh start has definitely helped. I no longer have to get agonizing botox just for insurance to approve 20 sessions of OT which consisted of me laying on the mat stretching for 45 mins while my OT works with 5 other patients and only pays me attention when shes reminding me I wont get better than this while stretching me to tears and making my tone worse. Here people actually have hope for me and I have so many alternatives (acupunctture, yoga, etc) that I didnt have in my hometown.
     
    My goal for therapy is just to normalize my arm and wrist by decreasing the tone. My fingers are so lose and I have e-stim for that. I feel like decreasing the tone in my wrist and arm is not only a easier goal than say "oh i wanna move my hand" but it will also be more visible wen I see how much my elbow has gotten straight and slowly straighten my wrist back.
    I am going to be doing therapy twice a week at 7am before work. I feel hopeful I can achieve my goal of straightening my elbow more even if I have to get an air splint and wear it at home while Im laying down. Therapy with her felt so good. She felt like a true friend. The slow stretches felt really good. Instead of feeling like my muscles were being stretched out, it felt like they'd been clenched for so long and could finally relax. I look forward to working with her.