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.

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.

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

I bought another car. I did not tell my dad and I know he would have told me "not to, Im not ready to drive in the big city, I can't afford the debt", etc but I needed it. My foot was so busted and blistered up from taking the bus. I still use my bus pass but I love having my car if I just need to go down the street to pick up my medicine or get my groceries. My supervisor puts me on the schedule a lot to work until 8pm and they do not want me to wait for the bus late at night because the area is not safe. I tried to schedule the handicap bus to pick me up since I knew I would be getting off work late but there was no one to pick me up. I didnt want to lose my job already for not being able to get to work on time or being a burden to everyone else that has to wait around for me and make sure I get picked up. So I went and bought a car. My credit was good so I financed it and got full coverage insurance. I got points on my license from my last accident so my insurance is very expensive. Im trying to think of new sources of income I can use to pay for it. Life is going pretty good. Work is perfect. Being on my feet all day standing stooping bending walking is great. I dont get spasms in my leg at night anymore from sitting at a desk all day and I dont get pain in my shoulder from being hunched over a computer screen all day. Rehab finally called but I just got the message today. I will call Monday to schedule OT. I meet with the bioness rep on Monday too. I decided not to buy it. I decided to take some of you guys advice and just accept things. Having my car, living on my own, working a physically demanding job, makes me feel normal and gives me so much more self esteem. I plan to start OT continue to exercise and use the bioness during OT but 1) I dont have the money anymore to pay for bioness since I bought my car and 2) I have so many other things to make me feel normal instead of just focusing on being ambidextrous. If I can do everything I ever wanted without the use of my left hand, why continue to dwell on it? Its been 11 years. I cant stay stuck on the same one goal from 2001. My life has changed so much. My goals are just to take care of myself, be as independent as I can, and in the process dont destroy my knee/ankle/foot, and dont let my fingers tighten back up. I am living the life I always thought I'd never have and I dont want anything to bring me down. Thanks for your advice. I continue to try to use my hand when I think about it and do stretches while Im reading. I got to stop saying I cant use my hand. I use it everyday to hold my toothbrush when applying tothpaste, I use it to hold utensils when washing dishes. I use my arm to carry the mail or my coat and to hold bags of food while I cut them open when cooking

seizures I know you guys told me I should see the neurologist but I had to reschedule my appointment for next month and wont be able to see him until February. I am kind of afraid to bring it up because I don't want to get my license taken away. I really want to be able to drive again when I feel comfortable and right now I don't have to be reviewed by the med board until 2014 so I don't want these mysterious dizzy spells to mess me up if he puts in his chart that I still have seizures. I looked through my journal and luckily I found the dates everything has been happening October 25- my first dizziness/seizure in my sleep. I woke up during a dream Nov 10- I felt dizzy while going in and out of a nap during the day. I guess I was half sleep or trying to fall asleep and my brain got stuck in that phase where your not actually sleep yet but your thoughts are all mixed up Nov 12- Started the bioness Nov 13- Started the baclofen again Nov 19-got my shoulder injection where I felt dizzy after dozing off from the "relaxation shot" Nov 22- had the worst seizure yet, banged on the wall, bit my tongue, tried to scream for help til i could wake myself up Looking at these dates, I actually started getting dizzy before I got back on the baclofen so I cant really blame it on the drowsiness. I know my doc had told me before that abruptly stopping baclofen can cause seizures but he didnt say anything about abruptly starting it. I also cant really blame the bioness because it seem like I would have a seizure while Im doing the e-stim not randomly in my sleep. my hand Anyway I am trying not to give up. Trying to look at the positives in my life. My thumb, index, and pinky are getting looser but my ring and middle fingers have so much tone still When I was reading my journal I was reminded all the pain I was in just a few weeks ago. I couldn't even sleep because my arm was so bent. I guess the injection, baclofen, and e-stim are helping. I straighten my arm more and my fingers are more relaxed I wear my wrist support at work and its easy to put on my splint after I do my bioness for hour and a half. My doctors in Fayetteville are still being slow about transferring my medical records so I have not been scheduled for OT yet but the bioness rep said he can see me on Monday for a follow up. I hope he can get the bioness people to extend my trial and I hope he will put my bioness on another setting for my last week so I can actually move my fingers more. working I love my job. At first it was intimidating. I shelve books all day so it is kind of intimidating since everybody else uses both hands but I use one. Im great at it and I've been doing it since high school but I still feel like my co-workers are judging me in some kind of way. I dont know if they think Im amazing for figuring out how to get big books in small places or if they think Im slow and wish they had a quicker worker. I think Im a great worker. I love being on my feet moving around. It makes me feel more able bodied and I love what I do so I don't get tired. I wish I had all my vision. It would make organizing the shelves more quicker but I guess I got to stop being so impatient and just take my time and do it right even if I do have to stare a little longer to make sure everything is in order. My Vocational Rehab counselor gave me a December bus pass since Im working now so I won't have to walk as much since I will have unlimited rides and not have to scrap up a dollar every time I want to get on the bus. P.S. I have not made up with my parents. I have to do everything for myself, pay all my bills, while my dad still changes my 25 year old high school drop out brother's diapers and fixes his meals. It just isnt fair. There is nothing wrong with him and my dad does everything for him while I have to financially take care of myself. my mom is so mentally gone I cant even reach her because she threw her cell phone away. My family is a hard topic I'd rather not discuss openly on the internet anymore. For whoever asked if I tried a different muscle relaxant, yes I tried zanaflex and it put me straight to sleep worse than baclofen. Well sorry this is so long. I love you guys

I think I've been having seizures in my sleep. It started like maybe a month or couple weeks ago. I cant remember. I was trying to fall asleep and I remember having a dream but it was like I was in and out of consciousness. I just remember feeling like someone was pushing me into my bed and I was pulling my pillow to keep from falling. This happened again but once again I thought maybe it was just a nightmare or something. Thanksgiving morning it happened again but this time I knew it was a seizure. It felt like someone was pushing my head into the pillow. Luckily I had drank a lot of water so I woke myself up about 4:30 or 5am. My dad asked me if I was okay because he said I had been banging on the wall about a hour ago. I told him I was okay. It was his birthday so I didn't want to worry him. I later discovered I'd bitten my tongue. I was probably banging on the wall for someone to help me because I was trying to wake myself up. These type of seizures have never happened to me before. I don't feel nauseous or dizzy and I never feel like Im having one in the daytime. It is only in my sleep when this has been happening. I almost had a seizure last Monday when I went to get my suprascalpular injection. Ever since starting back on the baclofen I have been super sleepy all the time. The day I went to get my injection, I'd already fallen asleep twice on the bus and in the waiting room so I probably shouldn't have got pre-medicated. but i tried it anyway. The nurse gave me a shot of benedryl in my arm to "relax me" then left me in the room by myself. I fell asleep but when I opened my eyes to see the nurse had returned I almost had the seizure. I had to snap myself out of the trance, walk down the hall, get on the bed, roll over, and take off my shirt so they could reach my shoulder. Of course I wasnt sleepy anymore. If anything I was more scared a seizure would come. Next time Im just going to get the injection straight. I had to sleep the entire rest of the day and I still felt in a daze the following day. I just cant take this. Im tired all the time. Im scared to fall asleep. My doctor hasen't even set up OT because my old doctors have not transferred my medical records and I only have 2 more weeks with bioness. I did catch up on the time I skipped and now I am up to 2 90 minute sessions a day. Sometimes I see more movement in my knuckles and my thumb is responding a lot more but I still wish the rep wouldve programmed it to open my hand. It always brings me to tears to try to pry my fingers off the hard plastic when Im done. Other stuff has happened. My visit home was horrible. I cried everyday. My mom upset me and my dad upset me but I don't feel like going into detail. I've also done so much walking sometimes I don't think I can make it home. Today I almost fell trying to make it back to my neighborhood from the bus stop. The sharp pains going up my leg were too much for me to bare any weight on that left side. I finally have my own place, license, bioness, I start my new job tomorrow and now I still can't be happy because I got to worry about family, not being able to walk, seizures, and wasted money and time on technology thats not going to work for me. I cant take anymore

Thank you guys so much for all of your encouraging comments on my last entry. I don't know what I would do without this site. You guys always know exactly what to say. I just wanted to update you guys really quick. The day after my disappointment, I found a doctor here, they wrote me a prescription for the baclofen, and Im waiting for them to schedule OT for me. I get my supra scalpular injection in my shoulder on Monday and I have been taking my old dosage of baclofen so hopefully that will help loosen me back up since I don't know anyone here that does botox. I did not want to have to go through all this but its worth a try I guess. I have not been following my program like I should. Its so painful getting the bioness on, it's painful for my fingers to be cramped up that long, and its painful trying to get it off only using my good hand. I want to cry everytime Im putting it on and taking it off. Add the fact that I am freezing cold cant move, and dont do stretches before I put it on. It just seems pointless and Im not motivated too much. Im supposed to do it twice a day but lately I have only been doing it once. I know it is not a magic pill but with all the effort Im going through right now, I expect to see more results I guess

Today I went to get fitted and and get my bioness registered. I was so excited figuring out how to charge it up lastnight and I woke up at 6:00 this morning from the beep that it was fully charged. The green light was so beautiful to me. It was like now is the beginning "the first day of the rest of my life". I never fell back asleep but instead stretched all morning and wore the splint to keep my fingers straight since I couldn't keep it on lastnight. Unfortunately I had to keep removing it and by the time I got to therapy my fingers and wrist were red from the pain. My experience today was a bit disappointing. Last year when I tested out the bioness, my fingers sprang out after a little stretching. It felt so good but so painful for them to stretch out. Even over the summer when I tried an older e-stim machine my fingers responded pretty good. Although they didn't straighten all the way, they tried pretty hard. Today, however, I wanted to cry. My fingers barely budged. The bioness rep had it on a low setting and it was just on pulse so perhaps he did not have it adjusted to really open my hand but the rep was kind of discouraging today. He told me things like the purpose of the bioness and he emphasized I probably wouldn't get motor skills back. He suggested I get into therapy or get botox but definitely get back on baclofen or some kind of muscle relaxant. He said I had so much tone he doesn't know if I would really benefit from bioness and I must not have had that much tone when I first tried it last year. I knew the bioness wasnt going to magically stretch my hand and I knew it would take a lot of exercise but I guess I didn't realize I have such a long way to go. I guess hearing him say the bioness might not be right for me is what really hurt me since the bioness has been my only hope. If it isnt right for me, I don't know what is. Its just kind of frustrating. I have to possibly get painful botox again. Im already signed up for the supra scalpular injection in my shoulder, in order to get the best result during my trial I need to get back in therapy, AND it looks like Im going to have to get back used to being tired all day since the only medicine I have is the zanaflex. I met a lady outside while I was waiting to get picked up. She had a stroke in 2002. She gave me her number but I couldn't help but envy her perfectly straight left hand. I asked her how she got her hand back and she said she knew about strokes so she made sure she wore the splint all the time when she was in the hospital. Both she and the rep said I have some contractures in my wrist. Im supposed to use the bioness for 20 more minutes today but right now I just feel mentally exhausted.

I am glad I stopped the anti-depressant. I think increasing my dosage made things worse. I felt like a sad zombie. Now I don't know if its the fact I stopped the anti-depressant or the fact great things are happening but I can actually feel happy. I got a job! I had an interview last Monday and they just called me yesterday to offer me the position. I was afraid I wouldn't get it because I was 20 minutes late to the interview. I had to walk about 45 minutes to get there because I was too impatient to wait for the trolley. Im guessing they maybe liked that I was so determined to make it there that I walked 2 miles (more if you count me getting lost) and still did an amazing interview. Positive thinking worked in my favor. I kept telling myself I already had the job and it worked! They asked me if I'd needed any accommodations at the end but I immediately said no. They kind of chuckled like it was a dumb question. Its like they couldn't even tell I was disabled. Im going to be a Library Aide at the public library. The hiring manager even commended me on wearing flats I said of course if Im going to be working in the library I should wear comfortable shoes right? She said right lol. So basically the fact that I walked to the interview (instead of drove) and wore flats (instead of high heels) actually worked to my advantage because it completely blind-sided them from my physical disabilities. It felt great not to be judged on my flaws and now to have my first real job! I've only ever worked temporary internships so I feel really grown up having my first real job. My bioness H200 came on Monday. I was so happy I shed a tear. Its like everything I've been waiting for the past 11 years lay right there in that box and it is mine. I will be meeting with the bioness rep who is going to fit it for me on Monday. Then after that, its nothing but exercise (except when Im at my new job). I love the fact that I live by myself. I am no longer confined to my room at home with my dad and brother. I have a whole list of things I want to try to do around my apartment with my bioness. I can not wait until I use it enough to where it straightens my fingers all the way. The bioness rep said we could even see if I can get signed up for some outpatient therapy since the rehab center we will be meeting at also has the bioness. It is like finallly hitting me that I have everything I ever wanted (except the left field vision and the better leg) but really when I first joined as CagedBird I was a sad lonely depressed bullied high schooler who couldnt get a license, a job, or a real friend mad at the world who couldnt go a week without crying. Now the life I never thought I would have is here living on my own finally away from the depressing room I drowned myself in tears in, got a license but taking public transit by choice, working a real job, and have the power to move my left hand more than ever before. Today I walked (about 30 minutes) to the grocery store, shopped, and came home and made salad. I used my one-handed cutting board to peel and slice my cucumbers. I felt so proud. Im happy that I can feel happy again and I know its because I finally got the one thing I been praying for since 10-18-01; hope. Im motivated more than ever to exercise the pain away and start using that hand.

It's coming Monday. It has been a very frustrating journey and has not turned out the way i want but I think it will be worth it. Voc Rehab was not going to pay, my dad's insurance denied it twice, I got the certified hand therapist to help with my appeal but even after she vouched for me that e-stim works on my hand, the reauthorization still got denied. I don't have the time or energy to keep fighting the insurance companies. I looked on the internet for used ones for sale, I called the hospitals around here to see if they have any vendors who sell it cheaper but they only have the WalkAide. So I have to buy it myself. Honestly I don't care if I end up a homeless bum in debt, it will be worth it just to be able to stretch my fingers for 5 seconds. I am going to rent it first for a month and the CareCredit approved me about 5 grand for a credit card so the girl I've been working with knocked the price down for me from 6 grand. It was supposedly 8 grand last year when Voc Rehab refused to pay for it. I find it hard to believe that the new wireless unit is actually cheaper but I cant keep waiting year after year to see if the price drops and it doesn't look like any day-time talk show hosts are going to donate it to me. I knew my dad wasn't going to be happy when I told him my decision. He told me I didn't have the money and neither did he. He told me not to get it. Truth is we both have the money but were both on fixed income. It just really upset me the way he acted. He is the worst "caregiver". Its like my whole family was all "hallelujah Jesus gonna heal you" right after my stroke but 11 years later now they are looking stupid and have just accepted this is the way I am. I hate that. I hate that no one helps me. I find the technology. I find the doctors. I schedule the therapy. My dad never once reminded me to straighten my arm while walking or tried to find out more about some new technology he seen on the news that could help me. I hate that I have to get a credit card and buy this machine all on my own but the good part is they are giving me 18 months to pay it off 0% interest and being able to use my arm for the rest of my life is worth more than any mount of money. I've waited. I've done my research. Ive exhausted my options. so once again Im taking things into my own hand. I will let you all know when I get it and meet with the guy that is going to fit it for me and show me how to use it. Also I know I've been talking about this thing for a while and some of you tell me to try something else and there are machines that do the same thing and are cheaper but I cannot open my hand and cannot move my wrist up and down so that makes me ineligible for a lot of the other technology and treatments. Bioness is the only thing that has worked for me and by purchasing it I can use it whenever not just 30 minutes a week as an outpatient until insurance decides to discharge me from therapy

Thank you guys so much. All your comments helped put a smile on my face. I am so glad for this site! You guys always know the right things to say I am glad I made this blog entry instead of keeping it to myself. It helped to read your comments every word

Today is a day I don't want to remember so clear in my mind like the 11th of September 2001 such a tragic year who knew I'd spend the rest of my life in fear Not only of terrorist attacks but of seizures for life, of more surgeries, another stroke, never becoming someone's wife Who can slip a ring on my crippled hand? I'd rather have been killed by the taliban because my life ended in 2001 God gave me 12 years to have my fun Since then happiness has been few and far in between No matter how hard I try I cant feel a thing Like a curse, the stroke numbed my emotions Brain damaged searching for magic potions I thought an anti-depressant would be my happy pill but happiness seems to be something I just cant feel The surgeons removed joy from my brain all that is left is discontent and pain These are the only two emotions I am capable of feeling since I never received my long awaited healing they said my left side would be good as new told me of all the miracles Jesus would do Now 11 years later all hope is lost They never told me miracles come with a cost insurance, therapy, bioness, There's no magical button for God to press being happy is easier said than done Getting back to normal is a battle I have not won "But you've accomplished so much" they try to remind me The stroke was so long ago I should just put it behind me But the pain of one day outweighs all of my good days combined 10-18-01 the day happiness was permanently removed from my mind I wrote this poem yesterday. I cry when trying to read it out loud. As most of you know yesterday was my 11 year stroke anniversary. I tried to be happy but I couldnt even blog because expressing my feelings only made me cry harder. I feel so bad for not being happy. I have not been writing much because I wanted to stick to my vow of keeping my blog positive. I have been participating in a creative writing class so I usually put my sad thoughts in the journal we are required to keep. I try to just share good things with you guys but I figured I'd share how my stroke anniversary was. I never know what to expect on my stroke anniversary. Most of the time it's like birthdays and new years, I have a pity party over all the things I still can not do, sometimes I am just thankful to be alive and try to focus on the good things that have occurred since 2001. I tried this year. I really tried. For those of you who follow my blog and post, you should understand my poem perfectly especially the last few lines. I wish I could break down every single line but I will spare you the negativity. Basically here I am 23 years old, living on my own, cooking for myself doing my own laundry, running my household, finally got my license in my wallet after fighting 5 very long years for it, finally receiving SSI after being denied for years after my stroke. Made my hometown proud when I graduated valedictorian on a full ride scholarship with a 4.0 gpa. I can walk, I can talk, there is so much technology out there for me to get better. I dont have seizures anymore. I haven't had a brain surgery since 2003. How dare I complain? How dare I insult God and dismiss all He's done for me? It makes me feel worse that I feel like God is angry at me. I am not ungrateful. I am so thankful for all that I have. It's just that I cant feel happy. I threw my zoloft in the trash yesterday. My neurologist upped my dosage from 25 to 50 last month but clearly it is not working. My poem was not about how I cant clap my hands or see in my left field. I have accepted these things. My poem was about how no matter what happens, I just cant seem to feel happy. I dont even remember what happiness is. The closest I got to happiness this year was using the bioness last October. Im sorry I just cant compensate my stroke deficits with my accomplishments to equal happiness. I don't care if I win the lottery tomorrow. Nothing can amount to me getting the miracle I've been waiting for the longest

Today I took a bath by myself since my stroke in 2001. It was a milestone. I remember when I had a huge bath seat I used to sit on right after the stroke. When I moved in with my dad he luckily had a stand up shower. I began using the handle from wal mart http://www.walmart.com/ip/Safe-Er-Grip-Bathtub-and-Shower-Assist-Bar-16.5/10848474?findingMethod=rr to help me get into the bath tub when I moved into my first apartment. Now today, living on my own, I got into the bath tub, took a bath, and got out by myself without falling all by myself! I had not taken a bath in 3 years when my mom had to help me so it felt so great to do it by myself. I brought the phone in the bathroom with me just incase I slipped or got to scared to get out and needed to call someone for help. But luckily I did not have to use the phone I am very happy and relieved that I did not fall. I was super nervous and it took me a while to figure out how I was going to get out but I did it! It wasnt all peachy though. The hard tub floor kind of hurt my left side when I tried to roll over since the muscles on that side are so tight, my left foot hit the faucet a few times, and my bath is kind of small so it wasnt as fun taking a bath as a 5'7 woman using half my body compared to an able bodied little kid washing my barbies hair lol. Since my 11 year stroke anniversary is less than 30 days away, it means a lot to me that I accomplished this on my own. If I would have fallen or chickened out, I would feel horrible so Im really trying to pat myself on the back for this accomplishment. I know I will get better and more comfortable with practice but right now I am just enjoying the fact that I did itfor the first time ever By the way this video of a girl taking a shower with no arms was my motivation

Wow sounds like a wonderful place to work. I wish I could work somewhere like that. You are very lucky.

wow this reminded me of when I had my first grand mal seizure. I was 11 years old playing outside at school. Everyone thought I was having a heat stroke but it was actually a seizure. Stuff happens you know. Don't blame yourself. It was just a lesson to remind you to pack him plenty of fluids from now on. I hope he feels better. I know it can take a while to fully get out of that "daze"

Well I had wrote a very long entry the other day, with subheadings, bold, caps, the works, but it disappeared so I will just give a recap and additional updates First of all, I quit the internship. It was just too much on me. I was tired of feeling like a bad worker. The lawyer didn't like the way I talked and interacted with clients plus he made it clear that I did not work fast enough so I quit. I consulted with a school counselor first and she advised me that the best thing to do would be to quit. I feel much better now that I did. I was also having transportation problems. The bus would get me there late sometimes and pick me up late. I worked at least 20 hours a week (unpaid) but the lawyer still was not satisfied. This has me wondering if this is the field I want to be in. Classes are boring and I don't feel like this is my passion. My bad experience with the internship plus a lack of interest in school has me really trying to decide if I want to stick with this. What I really want to do is write a book and build a website for people with disabilities (preferably teens). I love blogging so I want to do that too. My new guyfriend has motivated me to become an "internet entrepreneur" making money from home so this is an idea I really want to try out. As long as I can make a difference in the lives of people with disabilities, I am sure I will love it. I will keep you guys posted on my progress. As I said before, I have been having transportation problems. One day the bus dropped me off at the store and was going to leave me stranded there until at least 9:30 at night. My phone was dead and I was by myself but luckily I met a security guard who knew one of the employees who worked in the shopping center and she gave me a ride home. I hate riding the bus now. I love going places and seeing the city. I just hate the long wait. I had to wait an hour for another bus to come pick me up after getting dropped off to pick up my medication which only took all of 3 minutes. If I become an internet entrepreneur or writer or both, I won't have to worry about taking the bus or driving. I will finally be able to work from home doing what I love! I found out I have been approved for SSI so thank God I will have money to pay my bills. I was hoping to get some assistance from Vocational Rehabilitation but apparently they only help with job placement and since I don't want to work right now, I guess i don't qualify for their assistance. I found my wrist support! It was under my rug which my dad had moved the last time he was here. I cant wait to start wearing it again. Speaking of my hand, I gave bioness another call. My prescription was still good from last year so the rep submitted it to my insurance. I am praying I get it this time! I am glad to know I still have options though. She said I can rent it or we can appeal or get my hand therapist to show that the e-stim worked for me. There are so many options that I did not even know about last year but I am still believing that they will just approve it and I wont have to go through the extra stuff. Well I can't really remember what else I said in my initial entry so I guess thats all folks. Thanks for reading.

Hey everyone I appreciate all of your support during my new journey. I wish I could blog everyday. It is so many new experiences but I am just too busy. Every morning I go to class then I go to my internship every day. Some days I work as many as 7 hours and some days Im in class for 4 hours straight. It is a lot of work. I work at a law firm and I am pretty much the lawyer's slave. I got no training and they pretty much threw me in there head first. I have only been working there 2 weeks but I was ready to quit on the first day because of the attitudes of everyone and the tremendous workload i was expected to complete by impossible to reach deadlines. Things have gotten a little better though. I quit stressing and just started working at my own pace because I was really putting too much pressure on myself to meet the lawyer's expectations. School is pretty good. I just hope I do well on my assignments seeing as how I wake up at 7am, dont get home until around 7pm and rarely have time to just relax (after I cook, clean, etc) yet do homework. It's a lot of responsibility but Im hanging in there. On a more positive note... my internship has allowed me the opportunity to help people with their social security disability claims so I am really only choosing to stick with it because I love feeling like I am making a difference and helping people I can relate too. I lost my wrist support 2 weeks ago and still have not found it. I still feel self conscious about my arm and want to cover it. but today when I was going to check my mail one of my neighbors showed me his arm was just like mine. He'd gotten paralyzed after he got shot in the head a few years ago. I told him my story. It was so nice talking to someone who can relate to being "one-handed." I also dont feel so much like a freak because I got asked for my phone # today by this other guy and he told me i look great. that made me feel a little better about not wearing the wrist support in public to hide my "crippled" hand. oh yeah i also went to church and met some really nice people. It felt like one big family. I am glad I feel so normal here

I just found out I got approved for special transportation services! I had to do an assessment on Thursday and I got my eligibility letter in the mail today. This means that I will not have to stand outside waiting for the city bus. I will be allowed to take the special transportation bus which transports people with disabilities door to door wherever we need to go. Who needs a car? I am excited. I start my internship on Monday and start my classes on Thursday. Today I went to the gym in my apartment complex. We have a pool too but I know it would not be safe for me to go there without someone to help me get in and out of the pool. In the gym I just did some walking on the treadmill for a few minutes. I wanted to use the stair stepper and stationary bike but I could not use those because they didn't have foot straps on the peddles to keep my left foot on there. It felt good to exercise. Hopefully I can make it a routine and improve my gait. I wanted to work on strengthening my arm also but I cannot find my wrist support. I am going to try to sleep with the splint on tonight since it is the only other thing I can find. It usually falls off in my sleep but Im thinking about doing some stretches and taking the muscle relaxant before putting it on to see if it helps keep my hand in it. Well I think I am going to find something to cook

Thank you so much everyone. You guys are so great to me and I really appreciate all of the support. I moved into my one bedroom apartment last Friday. I was lucky to have my dad and brother move my stuff while my mom helped me decorate and clean. Without my car I have been stuck here just waiting on school and work to start but I enjoy the relaxation for now. I enjoy being here and having my own space. I can do whatever I want and i feel so independent. One of the things that made me most proud was when I washed my dishes. I used my affected hand to hold the silverware while using my good hand to wash them. I wouldve never though that by starting to use my affected hand to hold my toothbrush every morning, a few years later I'd be able to use it to help me wash dishes. Tonight as I watched N.Y. med sitting on my couch in my leaving room, tears came to my eyes. Watching the patients prepare and recover for surgery reminded me of all those brain surgeries I had to endure. Not eating the night before, not wearing any lotion the day of, having to suck on lemon swabs after surgery with a swollen face and bandaged head. Though I was young (12-13), I still remember these experiences. I remember when I would pray to God every night that I wouldnt have any seizures the next day. I remember having to get lifted in my wheelchair into my house and slowly walking through the house in my cane wondering when the day would come when I would be running through the house like a child again. Now here I am today seizure free, surgery free, and able to walk through my own apartment (blessed to be on the first floor) with no wheelchair, no cane, and no brace (unless Im going outside). It is a very wonderful feeling and a day I didnt know if I would ever see. As I reflect I just realize recovering from a stroke/traumatic brain injury is a never ending process and life does go on. Thanks for reading

Thanks so much everyone! Your support really means a lot to me. My dad has been nothing but negative. He doesn't want his youngest and only daughter to finally be away from home. It is really irritating though. I know he just wants to protect me and he just wants to be there for me but it is making me push him away. In his mind he is just trying to look out for me. but in my mind he is just being selfish, not letting me follow my dreams, and limiting me. I think he will come around though. He listened to my speech today so maybe now he will realize how much it means to me to be all I can be and not just sit around letting him take care of me. Today I had to make a speech for the 22nd anniversary of the Americans Disabilities Act. I did not know what I was going to say but I actually ended up speaking for about 40 minutes and I did not even take the time to write a speech. Everyone loved me. People were asking me for business cards and wanting copies of my poems. One lady told me God put in her spirit to tell me that I need to make business cards and go into business as an entrepreneur helping people with disabilities. she may be right. The law firm I will be interning at is also a Disability Advocacy office. And before I made my speech I met a guy at Staples who worked for the National Organization on Disability. Maybe this is all a sign this is what God wants me to do. I really do have a passion for working with people with disabilities. I am so excited. I even found out today from an interpreter that I can learn sign language using one hand! There is a guy that vacuums my office who is deaf and I always want to talk to him so I was really happy to hear I can learn to be an interpreter. I know that will help me communicate with more people with disabilities! I guess I will get started on my book of poetry and short stories. I dont think Im ready for an autobiography yet lol

Well I gave up on getting help from all of these people who are supposed to so called help (Vocational Rehabilitation). I did a vocational assessment and I pretty much have the idea that my counselor is not going to help me at all. After she told me I would need an address before she could transfer my case or a job offer before they could help me move, I went out and tried to make it happen. I got approved for a 1 bedroom apartment, found out they have a special transportation van that takes disabled people door to door where they need to go, and I even got an interview for a law firm that helps with SSDI, employment discrimination, personal injury, etc. My counselor actually got mad at me and told me I was moving too fast. I got so fed up with her. She would not even sign the paper I needed just verifying I have a disability so I could turn in my application to get special transportation services. Luckily, my neurologist's nurse signed it for me and I sent it off. I just really want my life to change for the better. I gave up on life so much but ever since I been taking the anti-depressant I just want to do everything I can to change my situation. I think I got the job. I will be moving in 2 weeks and I am registered for all of the classes I need for my paralegal program. I am excited about living on my own. I know it will be hard. My dad is worried about me getting around the big city by myself, being 3 hours away from home, and living by myself. I have to admit I am kind of nervous/anxious. What if I need help opening something or what if I can't reach something? Am I really ready to be living by myself, paying all of my own bills, and cooking all of my own meals? I wish I could be doing all of this as an able bodied person but I think I am up for the challenge. I have always got the most joy and felt the most normal when I was doing things that made me feel independent. I really believe living on my own taking care of myself and being in the big city where I dont have to worry about driving will be a good change for me. I think it will help my confidence and just being away from all the negativity, drama, and depression in my family will give me a fresh start. Wish me luck. I will keep you guys posted

I really dont understand why everything has to be so difficult. My insurance said my accident was my fault and since I got hit from the left I could not see what happened and couldn't explain to them how I was hit. Im still thankful I didn't get a ticket because hopefully it won't show up on my record while the med review board is reviewing my driving privileges. BUT, now I have no car. After wasting nearly 10 grand between 2 cars and inexperienced driver car insurance premiums, I have no money to get my car fixed or put a down payment on another. I like knowing I have a drivers license but I don't want to drive again. I miss the freedom. I hate having to depend on my dad to take me everywhere. I hate not being able to see friends and go wherever I want anytime I want. But that's the way the cookie crumbles I guess. I decided to move to the Charlotte metro area instead of Atlanta metro. I want to go back to school and need to stay in NC so I can get in-state tuition. It is just very frustrating. My vocational rehabilitation counselor is so rude and lazy. I have probably talked to her 3 times this entire year and have called her more times than I can count. I went to Charlotte yesterday to register for classes and stopped by the Voc Rehab office there but they cannot help me until I transfer my case from here. Well my counselor won't transfer my case until I move there and can give her an address. This makes no sense at all. I am asking them to help me move but first I have to live there. I am asking them to help me go back to school but first I have to prove that I can't get a job with the degree I have and I am asking them to help me move there to get a job but I have to show that I have a job offer already. It is so backwards. I just feel like no matter how hard I try I am going to be stuck in my room for the rest of my life. I hate being here. I get nowhere. I can't live here. I just want to go away, follow my dreams. What was the point in me working hard every summer of college and making straight As every semester if the system was designed for people with disabilities to just sit at home collecting assistance or give us some mediocre minimum wage jobs. I try to go that extra mile and make a living for myself but I can't get help. Sorry for rambling. I guess I just needed to vent. Well I do have good news. I tried e-stim for the first time since trying the bioness. It was so painful because my muscles are so tight and I havent had botox in a year an a half but it was so worth it. The occupational therapist said she definitely thinks the bioness will work for me because my fingers really responded. She got my wrist, pinky, and thumb completely straight. It hurted but felt so good at the same time. Now Im just keeping my fingers crossed that somebody will help me get bioness. I dont understand why all this stuff is out here if people that need it cant afford it and people thats supposed to help you make it extremely difficult.

No offense but your daughter in law sounds like a witch. I would just talk to her in a nice way and see if she can be more considerate. I would hate to have someone rubbing it in my face that I cant wear cute shoes cause of my brace! I was 12 when I had the stroke so everyone was extra helpful the first few years but once I got in high school I pretty much wanted to do things on my own so naturally I quit asking for help and my family only helps if I ask. I know what you mean about crying over things you can't do but someday you will. I started out in bed, wheelchair, quad cane, and now can walk everywhere (up stairs down stairs, get myself in and out of big trucks). Things that I used to could not do or needed help with like sitting on the floor or hopping up on the bed in the doctors office, I can now do. So don't give up, one day you will look back and realize how much you have improved (with or without the help)

Wow I have never heard of that. Glad to hear you are okay though. Thank goodness for pain meds