CagedBird

Stroke Survivor - female
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  1. CagedBird

    still caged bird

    By CagedBird,

    Yesterday I had a moment at work where I was fighting back tears. First of all last week a customer asked me what happened to my hand and told me she noticed because she works at the hospital. As I told her why I couldn't get anymore therapy, I felt like I needed to keep looking. Even though my doctor and his nurse couldn't find any providers in Charlotte that will take my dad's insurance, and I searched the website and called a list of providers myself, I just knew there has to be a provider in this city that will take my dad's insurance. So I dug a little deeper and found one. I have an appointment next Wednesday right after my neurology appointment. (Had another minor seizure Tuesday morning. Still remained conscious just woke up from my sleep and felt nauseous and felt like my head was shaking. I thought it stopped but then it started again. Next time I looked at the clock I had been sleep for a hour. )
     
    So back to work. I met a lady on Thursday who was looking for a inspirational book for her mom. I was trying to help her find Joel Osteen books because she said her mom listens to him a lot. Then she told me her mom just had a stroke. I honestly told her "lady I read all the time and there are no books that can make you feel better about having a stroke. I had a stroke when I was 12. Im 24 now. Sometimes even when you want to be happy you just cant. Our brains have been rewired unfortunately and I cant think of any book that has made me feel any better." I gave her the only Joel Osteen book I could find and I was not trying to be negative. I just wanted her to understand surviving stroke is a process and it may not be that simple to cheer her mother up especially since shes gone the last 66 years of her life as "a normal-brained person."
     
    So anyway back to why I felt like crying. I hate looking in the mirror. When Im at work I feel the public's eye drop down to my arm which refuses to straighten as Im using all my strength with my right arm to push the cart. Even when I try to use both hand to push I always feel like my hand is going to fall off so I move it. When I wear the wrist support people asks me what happened. When I dont wear the wrist support I feel like a freak show. I hear the announcer saying "look everyone not only cant she walk straight but her arm looks like a broken pole lamp. Come see this circus attraction!" Yesterday this girl that looked kind of "slow" asked me if my arm was okay. I told her yeah. She asked me if it just hurts. By this time I wanted to slap her in the face but I told her I had a stroke. She said awwww Im so sorry. I just stared at my computer screen and waited for her to walk away.
     
    I thought of this song "Caged Bird". My wings are my arms. Im tired of everyone looking at me. I just want to be able to spread my wings. I posted the video with lyrics and lyrics. I know you guys said Im no longer caged bird since I've accomplished so much but anytime I go into public I still feel like this...
     

     
    Right now I feel like a bird
    Caged without a key
    Everyone comes to stare at me
    With so much joy and rivalry
    They din't know how I feel inside
    Through my smile I cry
    They don't know what they're doin' to me
    Keeping me from flyin'
    That's why I say that
    I know why the caged bird sings
    Only joy comes from song
    She's so rare and beautiful to others
    Why not just set her free
    So she can
    Fly, fly, fly
    Spreadin her wings and her song
    Let her
    Fly, fly fly
    For the whole world to see
    She's like caged bird
    Fly, fly
    Ooh just let her fly
    Just let her fly
    Just let her fly
    Spread the wings
    Spread the beauty
  2. CagedBird

    just blogging

    By CagedBird,

    Well the day after my last blog I had another "episode". I woke up that morning and started having a seizure. My whole body was shaking and I was out of it. Then when I looked at the clock again a whole hour had passed. I dont know if I fell back asleep, lost consciousness or what. The good news is it has not happened anymore. It seems like when I dont expect it to happen and dont think about it, it happens. but when im worried and scared to death of falling asleep nothing happens. I went home over the weekend and I was so worried it was going to happen since it has happened every single time I have gone home to visit since last November, but it didnt. I never really feel relieved though. Even when I am having a wonderful day I am still worried that my night could turn into a nightmare But the other good news is I finally got a referral from my doctor to see a neurologist here in Charlotte. My appointment is in 2 weeks. I have still been feeling dizzy in the daytime but I just try to block it out of my mind and it goes away. Sometimes I just start talking to someone at work, start looking around, whatever I can do to keep from focusing on the dizziness.
     
    I got my new brace on Friday. I love it. It is called the Noodle AFO. I also got some inserts in my shoes to lift my feet up so they wont roll in. I can see the difference. I like that it is made from carbon fiber and not the big white plastic with all the hinges and pieces that tear up my shoes, make so much noise, and draw so much attention. Now I only have the black strap right below my knee and the black bar that goes behind my leg. I am looking forward to wearing dresses and skirts without feeling self conscious. I go see the foot doctor on Friday. I want to know why my big toenail on my affected foot is still black!
     
    Now I have some good news. I spoke at a Youth event on Sunday. I had not spoke since after graduation when I got invited to a lot of churches and events to share my testimony. I was kind of nervous but everyone really enjoyed hearing me speak. The pastor even asked everyone to collect a special offering for me because he believes I should have my own ministry. It really made me feel good to make others feel good. I love to make people feel inspired. I hate to make them feel sorry for me. I have been trying to work on thinking about how far I've come and being thankful. Everytime I get in my car or open the front door to my apartment I try to feel happy because I remember when I was permanently denied of a license and trapped in my depressing bedroom at my dads house.
     
    I also decided to go ahead and buy my e-stim unit. The company was going to charge me $500 anyway since I've technically been renting it for 5 months so I decided to just but it for the $750. Its better than the $5000 bioness was going to charge me. I still hate they suckered me out of $540 to try it for 4 weeks but Im not going to start on that.
     
    Well I am sorry this is so long. I still have no cable and dont really have any friends to talk to so I started rambling.
  3. CagedBird

    Torture

    By CagedBird,

    I have been up since 3am. I did not fall asleep until 12am. I got in bed at 9:30 but it took me forever to get to sleep because I was trying to fall asleep wearing the splint. I remember taking it off before I finally fell asleep.) I had usual weird dreams but suddenly as I was laying on my back, I felt like I couldnt move. I began to panic and scream trying as hard as I could to move my body.
    Finally I woke up and went to the bathroom. I cant remember the dreams. I really wish I could because I remember they felt so real and it was like I knew something bad was about to happen.
     
    Was this just sleep paralysis? Was it a night terror? Was is a nocturnal seizure? I am very thankful I was delivered from seizures after the surgeries but these nocturnal seizures are the worst. When I was a kid I just got a headache, felt nauseous, spit til I thought I was going to throw up, and it was over. Now the memory loss, convulsions, soreness, etc is just so much worse. Its like Im possesed by a demon or something.
     
    I just cant figure out what is triggering it. I ate 3 meals yesterday, took my medicine, and was not sleep deprived. I know some of you said it could be diet and i know lack of sleep and stress can trigger parasomnia but like I said in my last post I see no correlation between my diet and the seizures and I've been trying to go to sleep before 12 and not taking daytime naps because it seemed like staying up late/waking up early and taking a nap had a correlation with the nighttime seizures. The only thing that has changed about my diet is I have not eaten meat (only seafood) in over a year so I guess I could have some kind of vitamin or protein deficiency? I really think I need a sleep study/ EEG though. If I were just having seizures I would be worried but since they only happen at night or as soon as I wake up (knock on wood) I cant help but think they have something to do with my sleep. The ONLY correlation Ive noticed is the nighttime seizures happen when Ive laid in bed all day or took a nap. I cant remember having one on nights after I've been out all day. But I primarily remember them happening on days when I dont leave the house and just lay in bed all day (like yesterday)
     
    I just dont understand why this crap did not start until I bought my dream car, moved out on my own, and started working my first permanent job. What did I do to deserve this? Like my life wasnt already difficult enough. Well guess I need to get ready for work before I accidentally fall back asleep and have another episode. Im so tired now
  4. CagedBird

    update

    By CagedBird,

    I have been wanting to blog so bad. I had no internet for the last 3 weeks because I moved to a new apartment. I have been really depressed, crying all the time and just feeling horrible. I keep reminding myself of all the great things I have that I didn't have before but its like my brain just doesnt care. I think its the keppra. My neurologist increased my dosage from 500 mg 2x a day to 750 2x a day. I've experienced loss of coordination and dizziness daily. So it makes sense to me that Im probably also experiencing the mood changes, sadness, irritability, depression, and anger that are also side effects. I just feel like such a failure in life and with no internet or cable to distract me these last few weeks, it has been rough.
     
    Having some friends or family here would help. I quit talking to the guy friend I talked about in my last entry. I thought about what happened and although he came to the hospital to check on me and drive me home after the seizure in March, the fact that he did not call to check on me after the seizure last month made me feel like he does not really care, Being alone to your thoughts with no one around to lift you up is the recipe for depression. I am going to my anxiety and depression support group tomorrow. I am glad I finally have internet again.
     
    I had a seizure Monday morning that last less than 30 seconds. It was so weird. As soon as I woke up and looked at the clock it started. I could still move and talk but it felt like something was taking over my brain and it felt like I was trembling or something. I'd had a nightmare a few days before that. At least I think it was a nightmare. I'd woke up really early. I started to feel sleepy but knew I had to get up for work soon so I did not want to fall asleep at all because I didnt want to experience parasomnia. I was just so tired so I closed my eyes. Next thing I know there was someone walking into my room. I heard constant chatter in my head like a crowd talking. It would not stop. Then I heard loud bangs like construction was going on and fireworks and gunshots more people started talking louder in my ear. In my mind I was getting upset because I could not sleep with all the noise. I threw something at the wall to see if it would make a noise and to find out if i was dreaming or awake. (Iater I woke up I didnt see anything on the floor so I guess I just dreamed I thew something at the wall.) I felt like I was shaking. I grabbed my head to see if I was having a seizure. Everything was shaking. My body was shaking. Since I had screamed for help but nothing came out when the noises woudn't stop, and my throat was hurting when I woke up, I dont know if it was a real seizure or just the parasomnia.
     
    I used to dismiss everything as parasomnia but ever since the real seizure, I never know whats happening in my sleep and if its real or a dream. Lately whenever Im laying on my back or left side, it feels like Im falling off a building while Im sleep and I jerk back to my right side. Sometimes I feel dizzy and wake up but I usually go right back to sleep. My neurologist whose known me for 5 years says its parasomnia and a psychological issue. My doctor here whose known me for less than a year thinks its seizures. I dont know what it is. I am just hoping the increase in my medicine will help. My sugar level is fine and it doesnt matter if I eat nothing at all or a restaurant meal before bed, what I eat and the occurence of the seizures dont seem to have an affect on each other so Im guessing its just a neurological issue.
  5. CagedBird

    another "seizure"

    By CagedBird,

    Well first of all thanks for your kind words on my promotion. I love you guys. Unfortunately this entry is not so great. Friday night I went to bed late around 2:00 a.m. and I didnt eat any real meals just frozen foods and snacks. I was kind of worried about having seizures because lately for the last week I was either staying up with my cousin for my birthday or stressed out about my mom, neurologist visit and interview. Now that I know my mom is doing better my neuro doesnt think Im having seizures and I got the job, I'd thought I quit worrying about seizures or parasomnia in my sleep.
     
    Well I woke up at 4:30 a.m. in the bathroom with no recollection of how I'd got there. I came back in my room and the curtains on the window next to my bed were on the floor with the rod and everything. I had no idea how it got there. Then I remembered my friend was here earlier and I had fallen asleep next to him. but he wasnt here anymore. I tried to remember but I just couldnt. Then I felt the sore on the side of my tongue and knew that I had bitten it. My brain was still in a haze but I thought maybe I had a seizure. I just couldn't figure out how I got to the bathroom. The idea that I had probably slept walked and just felt weird from possible nightmares made me think it was just a parasomnia. But the fact that my curtains were on the floor made me think I must have fallen off the bed and since I had a slight headache, felt sweaty, and had bit my tongue I thought well maybe I had a seizure.
     
    I finally talked to my friend after I got off work. He is a pharmacist and has a degree in pre-med. He explained everything to me. He told me he woke up and I was laying on the floor next to the bed but he didnt notice the curtains missing. He told me I looked at him scared and asked "who are you?" Then I lifted myself up and got back in bed. Then I got back on the floor asked him who he was again and fell back asleep on the floor. He left me sleep on the floor. He told me he heard me making noises like I was foaming at the mouth or crying but I wasnt crying .
     
    I am glad someone was here to tell me what happened. I just wish I knew more. The way my friend described it doesnt really sound like a seizure. I've never talked while having a seizure. He said I got on the floor not fell on the floor. I still cant explain how I got to the bathroom though. Hearing him explain it doesnt sound like a seizure. I wasnt mumbling. I opened my eyes wide with fear and asked "who are you? I didnt fall off the bed. I let myself off and pushed myself back up. I didnt have any convulsions or hurt myself (except my tongue. So all this sounds like parasomnia but it was more than just the usual vivid nightmares or 10 second sleep paralysis. I dont know why it happened or why it started. I just want it to go away.
     
    I am going to start on the 750 mg of my keppra my neurologist told me to take. Maybe my brain is just getting used to the 500 mg its been taking since 2001. I just hope the side affects (dizziness, anger, hostility, depression, suicidal thoughts, mood changes) of the keppra dont worsen by me taking a higher dosage. I also hope the lamisil my foot doctor gave me doesnt give me any bad side effects or interfere with my new keppra,
  6. CagedBird

    I got promoted!

    By CagedBird,

    I just wanted to share that I got my first promotion at my job! I have never been promoted before because I have always only worked temporary government jobs. I had to go through the whole application and interview process to get promoted so I am very proud of myself. Most of all I have only been there 6 months and I was picked over a co-worker that has been there for a year.
     
    Sometimes I get frustrated with myself when I don't see someone standing at my desk waiting for help due to my loss of peripheral vision or when my left arm jumps (tries to attack) someone I didnt see rounding a book shelf corner as Im pushing a 50 pound book cart. But its always those moments when I double check the call number and realized I read it wrong and go back and put the book in the correct place, or those moments when I lift a heavy book and put it in a tiny place using one hand that someone with 2 hands was too lazy to do. Those moments remind me that I really am good at what I do.
     
    Well this moment as I found out I was selected for the position was the best moment of all. My supervisor told me what a great worker I am. She really made me feel good and really bragged on me. Sometimes Im struggling turning curves with one hand pushing those heavy carts full of books. While my coworkers do multiple things at a time and can squat and stoop to get to those books at the bottom of the shelves, I have to do things differently. It is very intimidating when you are the only "disabled" worker at a job that requires so much physical activity and visual attentiveness.
     
    So my promotion was like a milestone to me. It showed me that my weaknesses are also my strengths and it feels good to know that my hard work was noticed and appreciated and I finally got my reward. It also feels good to know that deep down inside I got promoted quicker than co-workers who act like they are better workers than me just because they've been there longer and can do things quicker.
  7. CagedBird

    doctor visits

    By CagedBird,

    Well first of all my birthday was pretty good. My cousin/bestfriend came to visit me so we went out to eat and shopping. The only part that sucked is she does not have a license so I had to do all the driving. My weekend turned sour when I went home for my appointment with my neurologist. I found out my mom was in the hospital because she was hemorrhaging. I almost lost my mom to colon cancer back in 99-2001. I took care of her when she was sick and she took care of me when I was sick. So it really hurt that I could not be there for her and I almost did not want to come back to Charlotte but I am just trying to have faith that my family will take care of her and her biopsy will come back okay. If you are reading this please say a prayer for her. I love my mom more than anything. I got really upset yesterday and Sunday but luckily I didn't have any seizures or anything.
     
    I seen my neurologist yesterday. I confessed about the seizure I had on easter. I told him about waking up in the middle of the night on the floor. I told him about the episodes in my sleep and when I wake up. He does not think it is seizures either though. I explained to him everything but he said he can't tell what it is. He did think my keppra level was low though. My doctor here said it was okay because it was 12 but my neurologist think it is low. He put me on 750 mg 2x a day instead of the 550 mg 2x a day I have been on since November 2001. He wants to see how that works then if I am still having the "seizures", he will do an EEG. I wish he would've just done one while I was there. I don't understand why I even need to be on seizure medicine if the AVM was what was causing the seizures and I got the AVM removed.
    He did tell me to see a sleep specialist and do a sleep test. I told him sometimes its hard to tell if I am having a seizure, if it is just sleep paralysis, or if it is just a nightmare and nothing is even happening to me. Hopefully seeing a sleep specialist neurologist here will bring more answers.
     
    I went back to my foot doctor. They said my toenail is infected (duh!) I could've told them that when I went there a month ago. They want me to take lamisil since my cuticle is black and see if it clear up but they have to make sure my liver is okay first so I am waiting to get my blood results back.
  8. CagedBird

    Just do it!

    By CagedBird,

    My wrist was sore for a little bit last week. I tried to wear the new splint to sleep but I kept waking up. Between my sore wrist and search for anti-pronation shoes, I started to thinking man I really need to exercises. Will the new shoes and brace do me any good if I am not doing the exercises I got from PT 6 months ago? So I began searching for my exercises. I looked everywhere then finally found them with my other hospital files.
     
    Unfortunately, I only found 1 page which had exercises I could not do at home because they required stepping up onto a chair. But what I did find was my arm and wrist exercises. I had so many copies of them. I looked at the date on the oldest one: 2007. I read my OT's instructions: do 10x daily for each exercises. and then I started to think what if I would have done these exercises 10x daily for the last 6 years? I immediately started to feel regret. How could I complain about the bump in my wrist when I did nothing to fix it?...
     
    Stroke recovery is one of those things I have always looked at as other people's fault. My doctors let me down when they waited a month after my stroke before sending me to therapy. My parents let me down when they did not tell me to wear my wrist support 24/7 before it had the chance to contract. I was a 12 year old kid and didnt have a clue what I was supposed to be doing. It was not until I found this group 5 years post stroke that I really got an understanding of what happened to me and what I needed to be doing.
     
    ..I know why I quit the exercises. I thought exercising would move my hand so when my left side would go right back to the way it was after insurance visits ran out, I just didn't see the point. I also got tired of doing everything on my own: finding the therapies, finding the devices, finding the doctors, going to therapy. It is like I was doing everything I possibly could all by myself and seeing no results....
     
    ...So that day I found my old 2007 exercises the light bulb went off. Over the years I have realized with stroke if you are not getting better, you are getting worse. Even though I didn't see myself getting better through the exercises, it was not until the other day that I realized I got worse without them. I though to myself I need to start exercising again. That will be my goal for this year to get my wrist straight. I really didn't feel like it but I told myself Just do it! I knew if I didnt do it that very minute, I wasn't going to do it period. So I did it. All of my exercises. Although I couldnt find my leg home exercises paper, I remembered about 7 out of the 9 I remembered PT giving me.
     
    The crazy part? It felt good. Exercising (stretching) used to be tiring and painful. But for some reason as I reached my left arm to the ceiling, did slow stretches with my wrist, and held my leg straight for 5 seconds, I felt a release. I think it was that realization that exercise does not equal miraculous instantaneous movement! (which I used to think. Thus the disappointment and giving up). So everyday this week I have been doing my exercises. As soon as I think about it I just do it! I still cant sleep through the night with the comfy splint but after exercise I wear it for 2 hours then I wear my wrist support. Sometimes I put it back on for another 2 hours before bed then wear my other splint too bed. It doesn't even hurt. I have not had any botox injections but right now my wrist is laying straight in my splint and I have it strapped as tight as it can go :-)
     
    Between the soreness of my wrist last week and trying to do everything with one hand like cooking and even just juggling cash and the receipt as the cashier hands it to me while Im thinking where can I put this so I can get my car keys out before I get to the car? has got me realizing I want to use both hands more than ever before. I am tired of having to put my book down just to turn the page (when Im not reading on the nook). Tired of only being able to do one thing at a time. I need my left hand and as much as Fred has told me for years to use it LOL it is just not possible when my fingers are clenched in a fist and wrist is bent. SO my goal for the next 6 months are to exercise every day, get my fingers and wrist stretched back out, and slowly start using my left hand more. I refuse to go into my 24th birthday sad and depressed about the things I can't do and haven't accomplished in the past year. I am not 15 years old stuck in my room at my computer anymore. The caged bird still has 2 wings and now that I am out of the cage I got to get my left wing better so it can help me fly!
  9. CagedBird
    Well I have tried finding a psychologist but I couldn't find one. I will have to call around again. I have a list of ones around here in my dad's insurance network. I just made an appointment with my neuro in Fayetteville. I go June 17. I am thankful I did not have to do a medical review with the DMV this year. My next one is not until spring 2014 and I am just praying that I will be seizure free a full year by then so I am going to just confess to my neuro everything and not worry about him putting it in my records. Either way I thank God I did not have to get my medical review check this year. I usually get it in May but I am glad I got a break this year!
     
    I have not had any parasomnia (nightmares, sleep paralysis). One of my friends said she mostly gets it when she doesnt sleep a lot or takes naps during the day. I know lack of sleep and stress can cause it and I realize the time around it started was when I was not working and was staying up all night and taking naps during the day. I have still been trying to eat 3 times a day. I have not had any seizures.
     
    One thing I think has definititely helped me is going back to church. I have not gotten depressed since I began going to church in April. Lately the pastor has been doing a series on Faith. I learned that bad things don't happen to us because God is punishing us. Bad things happen to make our faith stronger. Even when you are being a good person it doesn't mean bad things are not going to happen. In life bad things are going to happen. Having faith does not stop the bad things but it does help you get through the bad things.
     
    After I wrote my last blog, I went to church. I prayed at the altar and gave thanks instead of complaining. I have not felt dizzy when Im awake or had trouble sleeping. I do think it is positive thinking that has helped. I let go of my anxiety and fear. When I feel like I might be having an aura instead of getting scared and bracing myself for the seizure, I just block it out and say "Thank you God that I don't have seizures anymore."
    LEG
    I got fitted for another foot brace I am just waiting to see if Medicaid is going to pay for it. I am not getting the same big bulky white plastic AFO I have been wearing since 2001. I am getting the matrix. It is a black carbon fiber brace. I found out my foot rolls in from pronation which is making my knee roll in and back. I also need to buy court shoes or cross trainers, not walking/running shoes. I need a shoe that has support in the middle for my arch. People that play on a tennis court or go hiking need that side to side balance not the front to back flexibility. I need that side to side balance in the shoes. So I have been looking for new shoes. I am excited I am getting a black brace that will actually blend in with my skin LOL. I can finally wear shorts and dresses without people staring at my leg horrified asking what happened? No more long white socks, sweaty feat, and stretching out my shoes from the ankle hinges. I am excited and just praying I get it!
    HAND
    I successfully slept through the night lastnight with my hand splint on. I had not fell asleep with it since the last seizure that knocked me off the bed. I was scared that the discomfort would wake me up through the night and trigger parasomnia or seizures. The last time I fell asleep with it on was the night I woke up on the floor, splint had been taking off my arm and was laying on the floor, couldn't walk that morning, and fingers and wrist could not be touched without pain. Even though I did not have my arm strapped tightly in the splint last night, I am just glad I was able to even fall asleep and made it through the night. It is better than sleeping with my wrist completely flopped over with my finger tips touching my forearm. I am going to wear the wrist support today and try again tonight to see if that straightens it out more. Im just glad my fingers are not sore like before. I can actually exercise again. I called EMPI. I stopped doing e-stim because I have been using the same electrodes since I got it in February and they are supposed to be changed every 2 weeks. I was going to order more but I got a letter that medicaid is not paying for my device so I am waiting to find out if my dad insurance is in network and will pay for it. I hope I dont have to send it back.
  10. CagedBird
    Telling me to give up my license is like telling me to quit my job. Even when I have the seizures I still go to work and feel fine. I could definitely get hurt at work but I still have a job to do because ssdi just doesnt pay the bills. Its the same story with driving. I never felt dizzy while driving. I did have the grand mal pass out seizure that one time when I got to the store but this was not while I was driving this was as soon as I walked into a store I'd never been to before. I didn't even feel slightly dizzy while driving. I guess what Im saying is these seizures only happen when Im laying in bed either while Im sleeping or after I wake up. When Im keeping my mind occupied doing things like working and driving I dont have time to think about seizures so it just seems like the anxiety and thinking its going to happen is what triggers it which has only happened these 2 times when I was laying in bed. Not saying it wont happen while working or driving. just saying if i get rid of my car, i wont have reliable transportation, and will be at home more laying in the same spot and doing the same thing that triggered the seizure before.
     
    Also I told my neuro about what happened in my sleep at Thanksgiving and the night before my appointment with him in February and he said it was just parasomnia. The day after I wrote my last entry I had a bad episode of parasomnia. I woke up at 4:30 a.m. and couldnt fall back asleep. By the time I got sleepy again, it was almost time for me to go to work so I tried to take a quick nap but my mind was stuck in the half sleep half awake stage so I had nightmare after nightmare. My body kept jerking me awake. I heard screaming. I was screaming. I heard my dad's laughter repetitively in my ear. I got up got ready for work, drove to work, and as I was backing into my parking spot the car just kept going in reverse even though I wasnt pressing the gas. I was laying on my side so I could feel someone pulling me back in my sleep. It felt like someone was digging their finger in the middle of my head. I had to go to a mental hospital. I as crying and screaming but nothing would stop the nightmares and they felt so real. I don't know if the 2 seizures I thought I had while I was sleep were real or if it was just sleep paralysis. Basically Im just saying its daily activities like driving and working that keep my brain occupied and take my mind off the anxiety. Its stagnant activities like laying in bed that seems to trigger the anxiety.
     
    My neuro told me to see a psychotherapist for the night terrors, nightmares, and sleep paralysis which he called parasomnia. He did suggest that we checked my keppra levels since it has not been changed since my stroke 12 years ago but when I called my doctor the other day they said my level was normal. I do NOT want to change meds. My neuro suggested I do that when he thought the keppra was making my white blood cell count low 2 years ago. He witched me to lamictil and I had a seizure twice (once riding in the car with my mom and the 2nd time riding in the car with my dad to the neurologist appointment). The first time I was talking to my mom about me having a seizure and I think those memories triggered it. The 2nd time I think it was just the anxiety and recent memory of the seizure with my mom that triggered it. But these seizures were different. I just felt like I was dreaming. I didnt pass out and I could talk but it was this annoying out of body feeling and dizziness that lasted a couple minutes. Needless to say my neuro put me back on my keppra.
     
    Sorry this is so long but really. I have people telling me "don't drive, don't go to work, I don't need to be living by myself." But what am I supposed to do? Dont take a shower? Don't walk around my apartment without my brace? Dont catch the bus because I might fall into the road standing at the bus stop? Im sorry it is just frustrating. Im trying not to get depressed but with seizures life just isnt worth living. I had all these brain surgeries and a stroke to fix the avm and stop the seizures. I did my best to get on with live. So why is it bothering me now? Am I just supposed to live under a rock and try not to fall asleep for the rest of my life until the doctors can figure out whats wrong with my brain this time?
  11. CagedBird
    It just happened again. The same thing that happened 2 weeks ago before I went to work. Im laying on my back on my bed with my laptop in front of me surfing the web and I start to feel weird. "Here we go again" I think. "Oh no, God please help me." I say to myself as it feels like someone is squeezing my head. I let my laptop slide onto the bed as the "seizure" takes over. I close my eyes and cover my face as I try to keep from crying waiting for it to end. I think about calling out to my friend who is in the living room but I can't think of his name plus Im scared that if I open my mouth the only thing that will come out is a barely audible murmur and spit since my throat is burning with nausea. Just then it ends, I sit up. My friend came to my room to let me know he's leaving. All of this just happened to me. It happened 2 weeks ago too (minus the friend) but I went to work anyway and besides feeling lightheaded and anxiety, I was fine for the rest of the day. 3 days later was the night I fell off my bed probably from a "seizure."
     
    I don't know how many of you read my last blog but I wrote about being afraid to go back to e-stim because I thought it might be triggering seizures. I haven't done it in weeks. But now the good part is I can go back to it. I thought I was doing okay since I didnt have any "seizures" since last week but today showed me that maybe my OT was right maybe the e-stim and seizures was just coincidence. As I wrote the other day, I have been eating 3 meals a day and taking my medicine regularly. I have not had breakfast this morning but I also rarely eat this early anyway. I had a big dinner lastnight and got 6-8 hours of sleep so I dont have a clue why this just happened to me. I remember everything that happened and I feel fine now. No headache, no lightheadedness. It is a horrible feeling but after it ends besides sadness I feel fine. From my ER and doctor visit, I learned that as long as I didn't pass out it wasnt really a seizure. So now I don't know what it is.
     
    I REALLY dont want to tell my neurologist. If he puts in my paperwork that Im passing out and having seizures DMV will take my license and I will be stuck with a car I cant drive but still have to make payments on plus no more convenient transportation. I guess the good news is I know my e-stim wasnt triggering it so I can go back to exercising. The bad news is I just got a bill from the company asking for $750 so if my dad's insurance does not cover it, I will have to send the e-stim unit back and I've yet to find an OT in my dad's insurance network that can help me exercise so there goes my progress. sorry I am rambling. I guess I will call my doctor again and see if any irregular results came back from my blood work since they never called me.
  12. CagedBird
    I realized that I had just went to the doctor that same day all that stuff happened in my sleep. The doctor has not called me to come back so I guess everything was normal like it was before. I quit doing e-stim. I have not done it in about 2 weeks. So far so good. I have also been trying my best to cook and eat 3 meals a day.
     
    Last Tuesday I was riding in the car with my friend and I got really confused. It clicked in my brain that we were coming from a different direction and its like my brain could not process it or something. I started to feel dizzy so I tried to keep talking just to act normal but I could not explain anything. I dont know what I was saying. It was like I had a brain fart or like when you're about to say something then it slips your mind except I also felt light headed. We got out the car and I felt normal again. When I sat down my heart was beating fast but I didnt feel dizzy anymore.
     
    I have also been sleeping okay. Even nights I've stayed up late and woke up early I still sleep okay. I have not had nightmares or sleep paralysis since..well I cant remember the last time it happened. There are some nights my body will jerk me back awake as Im trying to fall asleep but I think that is only when I realize Im in that half sleep/half awake stage and my mind's awareness of it scares me into thinking somethings wrong.
     
    I do miss exercising. I still cant lift my arm up anymore, cant open my fingers even to wash them, and cant straighten my wrist to put on the splint without my body parts hurting like crazy. My OT said e-stim has not been associated with seizures so its probably just a coincidence. But Im scared. I mean this seizure stuff has been happening seems like ever since I did my trial with the bioness. I remember the day I went home for Thanksgiving I used the bioness for about 4 hours that day and that night I felt like someone was pushing my head into the pillow, my dad said I was banging on the wall, and I woke up at 4am confused. But since my neurologist told me it was parasomnia I didnt think it was anything serious.
     
    What do you guys think? My wrist hurts and my fingers are starting to stink so I really want to go back to exercising but the only way I can losen them up is through e-stim since even slow stretches are excruciatingly painful. Im probably overtoned from not exercising but at the same time Ive finally gone a whole week and slept good and didnt get dizzy. Perhaps its just cause Im eating better? I had the most seizures when I was a kid and my mom didnt feed me so maybe it is just a nutrition thing? All I know is I dont want to live or sleep in fear but I also still want to get better and not worse when it comes to my left side.
  13. CagedBird
    Right now my brain is in a fog. I have been having memory loss a lot since..well I cant remember how/when it started but it was around the time I started getting dizzy/ having seizures again..I think. Well lastnight I went to sleep at about 10:30. I think I woke up an hour later. All I can remember is I woke up scared to death and confused, I think I was in my bed. but then I remember getting off the floor. I don't know how or why I was on the floor. Maybe I fell off my bed? So I got back in bed and tried to fall back asleep but each time I felt myself dozing off, I would feel like I was getting dizzy and jerk back awake. Like my head would literally jerk to the opposite side each time I fell into that half sleep half awake stage. I began to cry. Its hard enough having to fear dizziness/seizures during the day. Sleep is supposed to be a time for the brain to rest but I fear falling asleep more than being awake. I just prayed and finally I fell back asleep around 2:30. I woke up a few more times but was so exhausted I was able to sleep until about 7am.
     
    When I woke up, my left (weak) wrist was very sore. It was sore lastnight as well. I keep trying to straighten it out but it is very painful. I fell asleep with my splint on but now I see it laying on the floor. I cant remember much from yesterday/this week/last week, but I do remember my guy friend did some exercises with me straightening my wrist. He was using all of his strength to straighten my wrist and shocked that it wasn't hurting me. It really wasn't. It just felt like a regular stretch, but now it and my fingers really hurts. I cannot blame it on him though because my left ankle hurts too. Lastnight when I got off of the floor I did like I usually do, bent my good leg and pushed off with my weak leg. The knee on my good leg was burning though from carpet burn and I could not walk when I woke up because any pressure I put on my left ankle hurted. I had to pivot and hold on to the walls just to get to my bathroom.
     
    So like I said I don't know what happened lastnight. I did go to the doctor...one day this week. I cant remember when. The nurse said my sugar was ok but they still took blood to check my keppra levels again. The only advice she gave me was to eat 3 meals a day and maybe take a multivitamin and calcium since I dont eat dairy or meat. I have been eating a lot since my dizzy spell/ seizure Friday morning but since I had to get my bloodwork done yesterday, I did not eat until the afternoon/evening and forgot to take my medicine until about 8:30 that night. I took it again before I went to sleep though.
     
    It just feels like no matter how hard I try to do better for myself something is always there to bring me back down. I cant even remember my friends name that I spent the last 2 days hanging out with. Im afraid to take a shower. I just dont understand why this stuff keeps happening to me now out of all the years I been fine even years ago days I ate nothing all day and forgot to take my medicine, this stuff never happened so why now?
  14. CagedBird
    I was looking at old pictures of me and my arm looked a lot better. I can't even tell there is anything wrong with my left hand.


     
    I want to get back to this so I have been exercising again. These pictures are my motivation. Today when my wrist was getting sore from wearing the splint, I toughed it out and kept it on. I did my e-stim for the 2 one hour sessions. It had been really difficult to get my new splint on at night so I got the orthotist to come back and adjust it for me. He said there was not much he could do and that splint was the best for me. I guess I just need to do more stretches before I put it on. I have just been wearing my old splint since it is easier to strap on and more durable.
    This is before I put it on

    Here is my arm with it on

    Here is my wrist after I took it off!
     

     
    When I am walking my arm is bent. wrist is completely bent and fingers are curled. I have no pictures of how I look now because I am ashamed. All I can do is look at my pictures from 2007 and think wow I look like this now because I didnt take better care over the years. I honestly think baclofen has a lot to do with it. Before I started baclofen at the end of 2007 my wrist was straight not big bump in it but my fingernails dug into my hand because my fingers were so tight. Since the baclofen my fingers are looser I can open my hand up to do things like hold my tooth brush and hold my medicine bottles to get the top off but now it is harder to get my wrist straight. Looking at my old pictures I was so confident. Now I am so self conscious. When I worked in my own office I could exercise freely and wear my splint with my arm under the desk. Working at the library, I am constantly walking around so my arm wants to swing but cant so it just stays there. Pushing the book carts makes me use more strength so my arm rises even more. I dont usually think about straightening it until I feel my fist hitting my stomach.
    I guess I basically felt like I was making a lot of progress with my fingers. The other day I got my left hand to open so good I could hit the palm using my good hand to make a clapping noise. (I was celebrating lol) but then looking at my old pictures was just a reminder of what will happen when I dont exercise. Now that I have the things I need to exercise and I am not eligible for anymore therapy, the rest is up to me. I am going to find my old exercises and do my best to wear the splints and make time for the e-stim.
  15. CagedBird

    moving my hand

    By CagedBird,

    I just wanted to blog about something positive. Ever since the seizure/ pass out/ whatever it was, I have been feeling a lot of anxiety, I can't tell if I am feeling the onset of a seizure, regular dizziness, or just anxiety that its going to happen again but it is pretty frustrating. I just have to tell myself "I'm okay. I don't have seizures anymore". I keep repeating it until my mind goes back to normal.
    Well I just wanted to share with you guys the joy of moving my hand! I can sleep with the splint on now. I exercise my hand when Im sitting at work at the desk. I am doing my e-stim right now. I can tell it is really helping. I remember when I could barely pry my fingers open using my good hand. Now my fingers are loose all the time. Even with the wrist support I can tell my fingers are looser. They dont dig in my hand and it seems like they are coming open more instead of being completely balled up. My thumb stays the straightest and sometimes it feels like I am straightening it when I really focus and try to move it.
    The only issue now is my wrist. Its like the straighter my fingers get the more bent my wrist gets. At night when I wear the splint, my fingers are good but my wrist doesnt stay straight. Is there anything I can do to straighten my wrist besides wearing the splint at night which doesnt really keep my wrist strapped down all the time? Im afraid to do weight bearing again because more than one OT told me that its too much for my muscles and can actually lead to more tone.
  16. CagedBird

    It could be worse

    By CagedBird,

    I heard the birds chirping. so many of them it was like they were echoing waking me up. As I lay on my stomach in my bed I felt my body shaking. My head was being pushed to the side. Here we go again. I felt a lump in my throat so I decided to roll over to my right side only to discover my head felt so heavy. I moved my legs to generate heat under the cover and removed the splint from my left arm. My heart was racing, my body felt chills, but the shaking and nausea stopped. I rolled over to my left side to take the pressure off my head and lay there trying not to fall back asleep afraid that it might happen again.
     
    This is what happened to me yesterday morning. It was not sleep paralysis because I could move and open my eyes. It was not night terrors because I was not visualizing someone trying to harm me. Was it a seizure? I dont know. Could it be that I have been having seizures and also have parasomnia? I dont know. I was pretty upset. I began to think to myself why? Why is God doing this to me? I finally got everything I wanted and he brings back the one and only thing I was supposed to be healed from--seizures.
     
    So last night I did something I had not done in years. I prayed for no seizures and I sent up thanks for all the things I had. I am happy to say I woke up feeling wonderful. I slept great. I slept through the whole night. I even kept my splint on all night. I dont think God is torturing me on purpose. but all this bad stuff happening made me realize how good things were. I guess I got so complacent with my life and the depression made it hard for me to be thankful but now that I have experienced worser things, it made me thankful for what I have.
    As I straightened my fingers using the e-stim I really took it in. I thought to myself wow my fingers are really moving. I finally have my own e-stim unit. I looked at my splints. I thought to myself wow I remember when I used to wish that I had something to keep my wrist straight. Now I have 2 splints and a wrist support and don't even use them like I should. Some days are easier than others. Even when I remind myself of all the things I wanted that I finally have, sometimes its still hard to be happy. But I am thankful that today was a day that I could just focus on the positives and think about how far I've come. I only hope that God will see that I am at least trying to be thankful, and give me more good days.
     
    Thank you all so much. I love you all for your support. I don't know what I would do without you guys. Today I am thankful for you all
  17. CagedBird

    i fell again

    By CagedBird,

    Yesterday I was feeling fine. I went and filled the car up with gas and drove to the grocery store. I parked, put my handicap placard up and walked inside. As I was reaching for a shopping cart I felt myself falling over. It felt like I was shaking. I don't know if I was saying it outloud or thinking it but I could hear myself saying "someone help me. What do i do?" Next thing I know I woke up in the back of an ambulance freaking out and crying because I was strapped down and didnt know what was going on. The medic said I had a seizure, the people at the store seen me falling so they caught me.
     
    When I got to the Emergency Room, they did an EKG on me, took my blood, and gave me my keppra through the IV. My arm and wrist were hurting really bad so they did an x-ray but didn't find any broken bones. Of course I fell to my weak side but if witnesses caught me, I dont understand why I am still in pain. I couldnt even lift my left arm up enough to put on deodorant this morning.
     
    Later when I talked to the doctor he said he didn't think I had a seizure since I remembered everything. He said it seems like I just passed out. I took my medicine the night before and it didn't feel like a seizure. Usually when I have a seizure I start to feel dizzy nauseous and get a headache. This however, felt like what happens when Im sleeping. Someone is pushing me and Im trying to push back while it feels like Im moving uncontrollably but really Im just laying there sleep the whole time. If I had skipped my medicine or been feeling dizzy with a headache I definitely would've thought it was a seizure. I didn't bite my tongue or anything and after I got over the initial shock of waking up in the ambulance I remembered everything and felt fine. No dreamy like memory, no headache, etc. It feels like I just cant catch a break but at least I wasnt at home by myself or in the car. Im glad it happened in public not while I was walking around at home without my AFO to protect my ankle from falls.
  18. CagedBird
    Thanks everyone for all of your comments they were much needed and appreciated. When my medicaid starts back up I will ask the doc to find me a therapist. I am reading the Secret and the Law of Attraction still trying to fight the depression and self-harming thoughts. To Sandy, I quit taking the anti-depressant because it was making me feel worse. To those that I chatted with that day, I told my supervisor my vision loss was the cause of me getting my schedule mixed up. She kind of understood I guess and let me make up the hours yesterday. I still hope she doesn't hold it against me the next time I accidentally put books out of order. I usually try harder to re-read the call numbers just in case and sometimes I have caught myself so if she ever says anything to me about it, I will let her know that I always double check before placing the books on the shelf to compensate for my vision loss.
     
    fingers
    I have been using my e-stim. I don't always do it twice a day and sometimes I don't do it at all. I have to start making it more of a priority. My electrodes are not sticky anymore so I dont get the best reaction from it. I e-mailed my OT and she told me to wet them and leave them overnight so I did that and am going to see if it makes a difference today. The batteries died in about a week but luckily the company sent me rechargeable batteries, an extra pair, and the thing to charge them with. I love being able to move my fingers again, I just wish there was something I could do about my wrist.
     
    wrist
    Alas, the brace guy brought me my new sleeping splint. It is very light and comes with a pump so I can inflate and deflate where my fingers are. I was so excited and eager to wear it to sleep but it has not been working out for me. I can straighten my wrist using my good hand but actually getting it on the splint and strapping it in is very time consuming and hard using only my good hand. Furthermore I always wake up in the middle of the night and take it off. I am going to e-mail my OT and see if there is any stretches I can do before bed to help. So far I have been doing e-stim after my shower (the warm water relax the muscles) before bed.
     
    foot
    The brace guy also took a look at my AFO since my PT said I needed an insert to help keep my foot from flopping to the center. The brace guy was the bearer of bad news. He said I need anti-pronater shoes and I need to buy a new pair of cross trainers. I have been wearing the same cheap tennis shoes since 2009 and since my foot pronates, my brace is too big for my foot so it has stretched out my shoe making me pronate even more since there is nothing to wedge that space. I am flat footed and knock knee'd so by getting a new brace and new shoes this will lift my feet from flopping to the center when I walk which will in turn straighten my knees from going to the center when I stand.
  19. CagedBird

    Why do I even try

    By CagedBird,

    This entry is not about my hand or my therapy, it is about my emotions. I try to be as positive as I can on here since a couple years back when I vowed to only make positive entries. but I need help. I usually write my depressing thoughts in my notebook but I feel like I reached my breaking point. When I first moved here back in August I attributed the depression to stress from the internship plus classes. I had met a nice guy and he always helped me feel better and motivated me. After quitting the internship and quitting school, I felt better but that guy is no longer in my life. Another guy came in and soon it was him making me feel good and promising to help me out when I needed it, but now he too is no longer in my life. So it is hard very hard because the only 2 people I thought I could trust, the only 2 friends I thought I had have both been ignoring me for a couple of months now. My cousin and sorority sister work full time so I cant just call them when I am sad. and it hurts. I feel so alone and I dont know how to control my emotions. When I started having thoughts of suicide again I tried to contact a psychotherapist but she does not accept insurance and I am already barely getting by living pay check to pay check as it is. My medicaid got cut off because I had too much money in the bank so I could not afford to go to the doctor and ask for a referral to a therapist.
     
    I just feel like I am not normal. I don't just feel sad sometimes or get frustrated when something bad happens. I break down and want to die every time I feel like I made a mistake or when I am having a bad day. I try everything. I've been reading self help books, looking for another job so I wont be broke all the time. Like one day I wrote in my journal all of these goals and plans I wanted to accomplish. I was really trying hard to not get depressed. Then while walking home I tripped on something on the sidewalk and fell on my left side. A stranger had to lift me off the ground because I just didnt feel like getting back up. I managed to walk all the way back home but my positivity went out the window.
     
    I dont want to be depressed. Nobody wants to walk around sad but I cant help it. Some days I just dont want to get out of bed and face the world. Sometimes I just want to quit my job. Not because physically I cant do the work but because emotionally I just feel drained. I dont want to be around all the people and put on the fake smile after Ive been crying my eyes in bed all day by myself in my 1 bedroom apartment. I have been searching everywhere for an answer. Studying different religions, reading books, making goals, I even joined a Anxiety & Depression support group. But when I went out to eat with them on Friday I had an anxiety attack on the way there trying to drive in 5:00 traffic feeling like I was going to get in another accident, then I had to spend my last few dollars to buy food and socialize with them.
     
    Sometimes I just feel like going back home when my lease is up. I cant take the stress of life. I wrote my own eulogy in elementary school and used to keep a steak knife under my pillow so I cant even blame my stroke for the depression but Im sure the brain damage made it worse. I just feel like Iif I cant die and God wont kill me why wont he let me be happy without making me go through so much. College and graduation were the happiest years of my life. I didnt have to force myself to be happy
  20. CagedBird

    No More OT

    By CagedBird,

    Well today I used my last OT session. It was bittersweet. The good news is I still have time to find a provider in network with my dad's insurance, my OT keeps in touch with me through e-mail, and I got everything I needed. I am very thankful for my OT and I appreciate everything she did to make the most of our 3 brief sessions. I got my NMES unit today. Medicaid has been slow so I did not get my resting hand splint but she did got the orthotics guy my contact information. I don't know it medicaid is going to pay for my e-stim unit and I am not clear on how much my deductible will be so it sucks I cant jump for joy over finally having my very own e-stim unit. I am just believing that insurance will pay and I won't have to send it back. I am excited to begin using it. It feels so good to feel my fingers stretch out. I feel like I wasted so many years of my life in my home town not getting any better then I moved here and got exactly what I needed in a few months. I am just working on my extensors right now. My flexors work pretty good at making a fist. I feel the pressure of "If it is to be then its up to me" since I don't have anyone to work with me. I have no family to help no friends around and no OT anymore so it is completely dependent on me how much I improve. Some goals I have are to:
    begin doing 2 1 hour sessions of e-stim a day
    finish reading Stronger After Stroke
    Practice squeezing my first then letting the e-stim open it back up
    Begin sleeping with my hand in the resting splint whenever I get it and wear the wrist support throughout the day.
    I cant believe it took this long for me to discover this journey was not over. I am just glad I worked hard to make this happen and finally got the OT I deserved years ago (someone who cared about helping me progress and not just getting a paycheck).
  21. CagedBird

    12 years

    By CagedBird,

    I had my stroke when I was 12 and this year I will be 24. It is kind of scary to think about it. It doesn't feel like it has been that long. 12 years since I could see in both my right and left fields of vision, 12 years since I could clap my hands in church and put my hair up in a cute ponytail. I have been using only my right hand to do virtually everything for 12 years. I have been missing so many people, images of places, objects everything in my left visual field for the last 12 years. I have spent have of my life on this earth as a stroke survivor. How many people can say that? I began thinking of this number 12 while reading some self help (personal development) books. In choosing a career or starting a business I am always advised to choose something that I am good at and have a lot of experience at. This led me to thinking well I know a whole lot about living with stroke so maybe I can be some type of motivational speaker, write a book, visit brain injury patients and stroke survivors in hospitals and assisted living centers. Maybe that is my purpose to use my experience to help others I relate to the most.
     
    The pessimist in me is saying its been almost 12 years. I will be 24 soon, I still cant move my fingers see to my left or walk without a limp. But the optimist in me is saying I can do great things and help others with my 12 years of experience as a stroke survivor. I dont know what it is yet but I want to do something great for teens with disabilities. I want to be a motivation to those that were picked on like me. It feels so good when someone I haven't seen in a while says Im walking better. I seen a stroke survivor taking tiny steps outside with his cane and I thought to myself wow that was me and now I walk all through my apartment without my brace and navigate through patrons and book cases all day (mostly pushing a cart full of books) without running into anyone/thing or losing my balance for the most part.
     
    Insurance has been slow and I am only eligible for one more session of OT but I am making it my goal to have my own e-stim unit and be sleeping in a resting splint by my 24th birthday. I will be using my left hand more even if assisted by my 12th stroke anniversary. Instead of dwelling on the therapy I didn't get and regretting all the exercise I failed to do and all the hours I couldve been preventing contractures by wearing my brace, I am focusing on the future starting now.
  22. CagedBird

    More good news

    By CagedBird,

    Today was my 2nd session of OT. My therapist is like an angel sent to me. She told me I don't have any tone or spasticity. What I have is muscle shortening. Through splinting we have to stretch those muscles back out. She molded a piece of plastic that goes on top of my wrist and she put some velcro straps around the bottom. I didn't think it would work because Im so used to the plastic being under my wrist and the straps going around the top. But surprisingly it kept my wrist in a neutral position and my fingers were not digging in my hand.
     
    I also found out there is an exercise I can do to retrain my brain to open my hand. She did it with me. She told me to squeeze then release. I knew I could squeeze but I didn't know I had the ability to release. I always thought my hand just stayed in a fist but today I discovered I actually can relax it after I squeeze. I am going to practice this using my good hand to help. So after we get the scripts from my doctor she is going to order my night time splint and find a e-stim unit for me.
     
    On a side note my job really makes me realize my abilities. Last night I stayed on my feet for 3 hours straight. One hour I was assisting in the computer lab and the next 2 hours I was shelving books. I always feel appreciated and smart when I help people in the computer lab whether it be showing someone how to upload a resume or just logging out of their e-mail. At my job I feel like there is nothing I can't do and the things I can do, I do so well. It is a blessing to have my right frame of mind and be able to communicate with the public as well as having the endurance to stand on my feet and walk around the library all day. (I do get to sit at the desk sometimes and I take my breaks when I feel tired so don't worry Im not overdoing it)
  23. CagedBird

    There's Hope

    By CagedBird,

    I finally met an OT that believes in me. My new OT is really great. Today was my first session of the 3 I get with medicaid. During this session she educated me on the differences between the splints, did some slow stretches with me, did some e-stim with me. and took down my insurance information so we can look into getting me some splints to wear in the day and at night and e-stim to use at home. She also modified my wrist support so it will keep my wrist neutral, gave me a little cylnder to hold in my fingers so they wont dig, and made a makeshift velcro strap so the cylinder wont fall out of my hand. We are going to start with a static progressive splint. That way if I cant get therapy after my 3 sessions are up, I can still slowly stretch those muscles that have shortened in my arm back out by using a static progressive splint which will allow me to adjust it to bring my wrist up slowly every couple of weeks. For e-stim to really help me I will need to be all stretched out which will take a couple of months. I am just happy I finally met someone in the medical profession that actually believes in me and realizes that I need to do more than just stretches. so our plan is wear the splints until my tone decreases, retrain my fingers to move through e-stim, and start using my left hand! Now that I have somebody that believes in me and doesnt believe in stretching my hand til Im in tears or leaving me on a mat to stretch for 45 minutes while they go work with another patient, Im ready. We have a clear plan and she is going to do the most we can in our next/last 2 visits so I will be all set.
  24. CagedBird
    I did my two sessions of PT. I do my 3rd one on Friday. Each time I get different exercises (and its a different therapist). I am really anxious to start OT. Time has gone by so fast. When they told me I would have to wait until next year I was so disappointed but my OT evaluation is actually next Friday (January 4) I got 7 exercises to do at home from PT and boy do I feel the stretch. I felt like I just had my stroke the day before I last went to therapy. I felt so helpless and kind of bad. I thought I was doing good walking good but in reality I have some major issues with leaning to my left side. I couldn't believe how scared I was just to stand up and sit down (without leaning to my good side). I guess I have a lot of work to do. I just hope I can keep it up. I did all 7 of my exercises and went to my apartment gym to ride the exercise bike. I wanted to do the stairs as well but somebody is always on the good stair stepper. The other one doesnt have any straps or back piece to keep your foot from slipping so I decided not to use it. My PT told me I could use the treadmills too but that day I didnt want to overdo it so I just walked to my doctor appointment which is only a mile from my house and took the bus back. It felt good to do the exercising (mentally not physically LOL) but I hope they pay off in the end. My PTs have all told me even though Im walking good I have to keep exercising so my leg will stay strong. If anything my overtoned contractured wrist and fingers have taught me that you can get worse when you give up on getting better. So I am going to try to stick with doing my home exercises and frequenting the gym after my little trial runs out Friday.
     
    I contacted my insurance provider to find some OTs and PTs that are in network but nobody returned my calls and a lot of the facilities did not answer. The ones that did answer of course told me they were out of network. I sure wish I had someone to help me. The wrist support Ive had for 3 years is starting to wear out. Either I have too much tone or the velcro is crap now but it wont strap down anymore when I put it on. I still have my comfy splint but it hurts so bad since I guess I have contractures in my middle and ring fingers with the most tone.
     
    I use my hand at work sometimes as Fred suggested. I make a space between books then reach my left hand in to hold them apart while I grab the next book to go in the place. I am at a public library so I still do not feel comfortable enough to push the book cart with both hands. Im afraid my hand will drop off as Im pushing and bring even more attention than when Im pushing with my good hand with my left arm bent in front of me.
     
    Some days are very hard. One day after talking with my coworker about my stroke, I felt down. Sure she was telling me how Im such an inspiration but I couldn't help but focus on her question "Do you think God can still heal you?" I guess I gave up on "healing". I think I can get better with the help of technology medicine and exercise but I no longer believe in the "miraculous healing". I've been to the altar too many times. I guess the man with the withered hand in the bible was the last hand Jesus felt like healing. Anyway that same day I was kind of down in the dumps and confused thinking about healing, acceptance, faith, etc. I was trying to wash dishes and it seemed extra difficult trying to do it with one hand. To add to it, I was trying to scrub a pan I burnt because I didnt have 2 hands to pull my burgers apart when i was cooking the day before and I had a mess of dry noodles in the sink from where I couldnt move the faucet out the way while filling up the cup. I had a little break down and shoved the faucet out of the way knocking over some of the dishes. I just couldn't take it. Sometimes I just wish I had someone to help me. To wash my dishes, to help fold my laundry, or at least to do stretches with my arm before bed when my good arm is exhausted and fatigued from doing everything else all day. Its hard being a "long term survivor". You have to accept you wont get better but still be motivated enough to keep yourself from getting worse while PTs OTs doctors and insurance companies want to be "debbie downers" and remind you of everything you cant do and never will be able to.
  25. CagedBird

    Therapy

    By CagedBird,

    I went to see the bioness rep yesterday for a follow up with my ness h200. I got kind of frustrated with him. He was irritated that I had used the bioness for too long. One day I used it for 4 hours when I was not supposed to ever use it for more than a hour and a half a day. This was the same day I had the seizure in my sleep so Im guessing too much e-stim that day could have been a contributing factor to my dizziness. I was afraid of getting dizzy again so I quit using the bioness for about a week. Still, the rep said I had too much tone. I think he doesn't know what he's talking about. I have not had therapy or botox since last spring and I've noticed my fingers have been looser since I got back on the baclofen last month but even before when I got e-stim over the summer I was only on baclofen (no therapy, no botox). Yet he claims I have too much tone for the bioness to work for me. I couldn't help but get an attitude with him. I havent been to therapy since May 2011, havent had botox since February 2011, but he wants me to believe I have too much tone to benefit from e-stim when I just opened my hand multiple times using e-stim last October and this June. I should have just done what Kathy Spencer said and asked for a new rep. He also told me it felt like I had more tone than I did when we first met in November. Yes I used the bioness for too long on certain days but I always took breaks. I never used it for more than an hour and a half straight and anyway me starting back on the baclofen should have reversed any more tone I could've caused. Oh well Im sending it back so sorry there will be no more bioness news.
     
    I was excited to find out I finally got my referral for therapy. I was scheduled to get my PT evaluation today and OT evaluation next week. but today at PT I found out Medicaid changed their policy and since my stroke was so long ago I only get 3 sessions per year. I was forced to choose between OT or PT. I decided to spend my 3 sessions this year doing PT then just work on my hand starting January. I will have to research other providers and find out what networks are in my dad's insurance because I cant afford the expensive co-pay to continue therapy after my Medicaid sessions run out. I feel good about PT and am motivated to do the strengthening exercises at home.
    Thank you all for your nice comments