socialwork555

Wow, it's been 2.5 years. I have to say, some of the longest, hardest days, and then on the other hand, some of the time just flew by. Highs and lows, as is life. I had my stroke at 31, which was quite a shock. I'd never had any medical problems worth noting. The first stroke occurred at my home, and then the big one occurred once I was in ICU later that night. I didn't know what was going on when it happened. I remember yelling to the nurse, who had earlier promised my mom she'd take good care of me as my mom left for the night, that I didn't feel right. She yelled (at 3am), "get transport". Then these people in white coats hurried into my room, transferred me to a small bed with wheels, and raced me as fast as they could through the halls, into the elevator, and put my head into a machine. They immediately raced me back upstairs, and started hooking me up to IVs to pump me full of medications to try to clear the clot that was stuck in my brain, killing part of it. I heard the my nurse arguing with her colleague, about whether to call my mom, and I could hear in the nurses voice that she was crying when she said "I don't care about the time". And I heard as she called my mom, and told her a had a substantial and more consequential stroke. It felt like a dream. They would never tell me if I would get better, or how much I'd get better. The doctors,the nurses, my OTs, my PTs....they all reported the same thing; there's no way to tell. I hated that statement so much that there are no words to express it. My leg showed improvement the fastest. But my right arm and hand lay still....I felt like they belonged to someone else. I had to carry my arm, move it onto the table, move it to my lap. My hand was always balled up in a fist. I was truly lost in this life of mine, wishing that God had taken me at the time of my stroke. I felt ugly. I felt useless. I'd always been so independent, and now I felt about as able as a 6 year-old. I felt that no man would love me again. But my biggest fear was that I would be unable to have children. I'd divorced my husband a year before this happened because he'd changed his mind on having children. I spent a time being angry at him for breaking his promise. But after 5 mo I started dating on disableddating.com. I met a local stroke survivor who had it much worse than me, and he took care of his kids, toddlers, on weekends. We went to the movies, and talked about life every other weekend. He was from Russia, and he explained that the medicare and OT/PT is so much better in this country. (unfortunately, although he was incredibly nice, he had killer breath, so it never became romantic). At this time I started reading as much research about stroke outcomes for young survivors. I was looking for some shred of hope. And one day I found it. I read a research study that stated that the best outcomes for survivors to have very mild to no disability 5 years after stroke were for those under 35, and those who had suffered a carotid artery dissection. That was me!!! I hated the five year expectation, but that was my little gold nugget. I looked at that study every week. I also did every bit of research I could about different interventions. I investigated the success rates of electrical stimulation on the hand and leg, and bought two ESTIM units for 100 bucks each. I took them in to OT and PT and asked if they could instruct me to use them---and in fact they could and did. They gave me three hours of exercises to do with the ESTIM units per day on the couch, which meant I had the chance to watch the Wire, Breaking Bad, Home Movies, Arrested Development, Weeds, Hung, Twin Peaks, Mad Men, Game of Thrones, American Dad, Family Guy, Portlandia....and many more shows I'd never had time to catch up on. The shows were my relief, my escape, into worlds where the problems were complex, or silly, or frightening, and the characters were my temporary friends, or enemies. I can never thank Netflix enough for the streaming revolution. I learned about the robotic hand device, the Saeboflex, and called around the Baltimore area to find out who was trained to use it, and switched facilities. My new OT Andrea told me to use the ESTIM for my wrist, and once I could move my wrist 15 degrees, I would be eligible for it. This was the social worker in me, asking lots of questions, talking to as many people as possible....but this time my client was myself. Now I was the vulnerable person, and my future depended upon having all the resources possible. And this is to say that you have to do your research, you have to speak up, you have to call around, and BE THE SQUEAKY WHEEL if you want to get better. I met David from Disabled Dating around this time, and he'd been through intensive therapy for years after a head injury related to a car crash. Dave had many odd ways (some that cannot be mentioned on this blog), but he made me feel normal, because he had been through it all. He encouraged me to do my exercises, and often reminded me that I was beautiful, and he was very accommodating for whatever I needed physically. So we dated for six months. (at which point he stalked me, innocently, but annoyingly, and still does, sometimes, to this day) I started to realize how blessed I was to have my retired mother taking care of me, and appreciated the time with her, since I missed out on it in my youth. I established an appreciation for the amazing therapy I was getting because I lived in this country. I launched back into the working world a year later, just as my COBRA was running out, and I was eligible for Medicaid through the Employed Individuals with Disabilities program. Again, this was something I found out by getting a case manager through DORS, the Dept of Rehabilitation. The exact month that I ran out of Cobra was July. The EID program became effective in August. and I then had Medicaid. I started to feel like somewhere, somehow, someone was looking out for me. I felt safe, protected. I began working part-time at a medical adult daycare center, where half of my social work clients had strokes, and a number of other serious illnesses. Many were wheelchair bound, needed oxygen, couldn't speak because of their strokes. People had bigger problems then I could have ever imagined. My clients also demonstrated a passion for life, a sense of grace, and they inspired me to be a better, stronger person. I picked up another part-time job a little after a year, as a therapist, and time started flying by. And then one day, almost as if it were a Christmas miracle-----I opened up my hand myself. To me it was like pure magic. I still gaze at my hand when I move the individual fingers and feel the miraculousness of the neural pathways traveling all the way down to my fingers. Eventually, my physical therapist let me go, feeling I was on my way to recovery. I didn't want to leave....I liked our little routine, and I'd come to rely upon her support. But it was time. At this point I asked my PT if I would I ever be normal. She brought me back again, as she had a million times before, to the "new normal." At the time I was somewhat crushed about the answer....because it meant no. But in time, I've come to accept my AFO (for my ankle) as a necessity for my safety, and I rarely begrudge stepping down the stairs slowly, and have made amends with the fact that I won't be a lifelong skier. What I do get to do is go to the gym....and so I do. At first, i was very scared--- but also excited. Back when I was a teen I went to the gym a lot because my home was a combative place, and so the gym has always been a place of refuge to me. So soon enough "Planet Fitness" became a satisfying and familiar place, with the same grinning faces greeting me at the door, same machines to use (elliptical and bike), and strangely enough, a place of solace for me. Exercising my heart, stretching out my muscles, and strengthening each individual body part--- it's my ritual, paying gratitude to my "house" that my soul resides in, for now. I think about that now and realize that I'm the same me that walked into the gym that first time when I was thirteen. I'm the same soul. I just have a slightly remodeled house. My OT kept pushing me along. Andrea, my therapist, said that she was astonished at my progress and that I was reaching my goals every month. Life was good. I'd also been doing a lot more occupational tasks at home, because I'd moved in with a new boyfriend and his children. I had all new challenges to face, and I did so. Climbing upstairs, to the basement, learning how to hold a giant laundry basket from up to down, folding the clothing, cooking, caring for the little one, organizing craft activities. Progress was happening, life was happening, and my brain just kept making those new neural pathways, every week. Andrea remained upbeat, and celebrated every success with me. We had a great time together. But she was finally ready to let me go, and I was ready to go. She told me she'd been the field for a long time, and that I was her success story. When I'd met very first met Andrea my spirit was completed trampled upon by my neurologist. The ignorant idiot had told me that because my hand wasn't moving at six months post-stroke that I would never have movement again. I gave up a lot of hope. It was the darkest time in my life. Andrea pumped me back up with hope. She said that his prognosis was simply not true. I remember that low, and me and Andrea worked and worked, and things just kept getting better and better. And every victory was OURS. I'm now working five days a week, going to the gym, and back with my mom. And I'm happy. I'm also newly and accidentally pregnant, so I'm hoping for a healthy baby in 7-8 months. I traveled on a plane to see my dad for the first time since the stroke. It took that long for me to feel comfortable. My stroke is now part of me, and part of my identity. I've accepted my disability, and I'm at peace with it. When I was "struck" I was reduced and humbled beyond comprehension. I needed every person along this journey that served as a helper, a smiling face, a listener, a cheerleader, a shoulder to cry on, a jester, a caretaker, and I thank them in my heart. There is a time to give, and a time to receive. It's been a great long, winding, wacky road, but I've always heard that you get the best views on the road less traveled.

Hello. I'm finally feeling like myself again! I'm not me without my work. I started working as a social worker for an Adult Medical Daycare, and there I really fit in......many of my clients have had strokes. I also got back to doing counseling on Mondays and Fridays, and I work in Baltimore City with the homeless, those in drug recovery, etc It reminds me to have gratitude for the way I'm living my life. I'm living on my own, in my house, and with my dog Paz. I get help from a guy friend (datingdisabled.com) about once a week just to do heavy lifting and stuff around the house, and of course my mom's still there to help. I get my groceries delivered. My depression is almost gone.......no further bouts of crying. But that's come and gone my whole life. I just re-entered therapy, because I was approved for medical assistance, thanks to Maryland's Employed Individuals with Disabilities program. Both my PT and OT have noticed nice changes since I've been gone for the past six months, but I knew they would. I'm back to the online dating world, and as I suspected, my profile draws in a lot of people recovering from various illnesses. As usual the online dating world is full of good things and disappointments, but I love meeting people, so that newness is good. My walking is good, but it's not like regular walking. I've accepted......over the past year and a half, that I'll never be what I was. Tough pill to swallow. My arm and hand are making slow improvements, but I haven't exactly been committed to my Saeboflex, the robotic arm device. My OT will whip me into shape. I am very comfortable saying to new people "I've had a stroke," and accepted my new identity, but it was certainly a slow process. One good thing that I noticed I was able to do was put my right hand up on the steering wheel and steer! So excited! So that's what's been going on in my world! Hope you all are healing. Whatever happens, remember your blessings.

Well here I am. Haven't written in a while, and it's the anniversary of my stroke so I figured it was about time. I finished outpatient rehab about a month ago, because my insurance ran out of sessions, and besides that, it was just time. I went to the best rehab, after the first hospital felt there was no more that they could do for me. The fact was that it was really small, the staff didn't have the updated education, and they just had no budget to buy new equipment. Howard County General, in comparison, was like a dream. They immediately started me using my home e-stim unit, for my ankle, my knee (for strength), my shoulder and my wrist. I started six months ago with no voluntary movement, and now I can move my wrist up and down. They told me that research indicates that electrical stimulation is the #1 method of regaining lost movement. I was sad that I didn't use it the first six months. Especially since I could buy my home unit for $100. The other area that I noticed marked improvement was my shoulder flexion. I slowly began raising my arm higher, in a forward movement. They also used an FES bike with me. It's like an regular arm bike set up with a computer, and they hook me up to 12 electrodes to help stimulate the muscles. I did 30 mins at a time. I can't really say if it helped, but it certainly didn't hurt. My balance has improved a ton, although it's hard for me to see the improvements. My walking is so much better-----no more hip hiking. I still wear my brace because of some foot drop, but it helps me walk so much bettter. It is a pain, because now I have to buy two pairs of shoes---one a size bigger than the other. What my physical therapist ordered was a customized brace---got my doctor to order a script. They actually casted my foot up to my knee for a perfect fit. Cigna paid for it all......my therapist didn't know why my first therapist didn't order a customized AFO. I had to go back to the physiatrist twice after he gave it to me to get it adjusted, because it was grinding on my bone, and then because it was causing a callous. A bit of a pain, but worth it in the long run. It helped me walk a lot more normal, and supported my knee a lot more. I'm bummed out about not wearing dresses......but I guess I'll get over it. My upper body-------well, I still can't use my hand independantly, but my arm has improved a lot. I slept with a wrist adjusted brace, which was to reduce my tone. I can raise my arm out to the side straight, bend my arm, do a bicep curl (ten in fact). I bought this amazing devise called the Saeboflex. I couldn't get it until I could move my wrist a certain amount, so that took three or four months of estim. Then she ordered it for me. It's considered a robotic devise, and I put it onto my arm. I see improvements every couple days. Especially in my arm range of motion and strength. I have these foam balls and a crate and I have to do the exercises daily. I can use my hand as an assist, and I still do regular OT home exercises. So even though I'm done with therapy---I'm really not done with therapy. So I am looking to go back into the work world. I miss social work. I would prefer to do part-time, but I'll look for full-time because of insurance. I was approved for disability, but the insurance doesn't kick in until this time NEXT YEAR. The payments are coming, but there is a two-year wait for insurance. Blah! The system. So I run out of Cobra in June....it's best I start looking for a job. So it's still up and down sometimes. I get depressed and cry, and then I don't really think about it. It could have been so much worse. And I'm very lucky. But I had a very happy holiday. I met someone who had a traumatic brain injury on disableddating.com, and he's so great. His injury was 8 years ago, so he's already been through all of this. He says watching me get better is like watching a miracle. I guess for outsiders it's very easy to see it that way. So every day I wake up, and I try to keep a good outlook. And sometimes I just don't. And that's ok.

I too had a blood clot from my carotid artery, and it's painful to see what you've lost. I'm going through the grieving period, which is strange because you really don't know what's coming back yet, or how bad or good it's going to be.

Well this week was interesting because I had my last PT apt, and she taught me how to use my estim unit, which I can use up to three times per day. I got motivation after my mother returned from vacation, thank goodness. I really do like having her around the house. So I used my motivation to call the PCP, and get another script for a new outpatient facility, with uses the Saeboflex. Yay! My last OT felt I had platoeud out because they didn't have the right equipment, and that I have potential to make more gains with the Saoboflex, since I can't open my hand. If you have experience, please share. My estim unit does seem to reduce my spacticity, so that's good. I got a new recommended neurologist for a month from now. I scheduled my 6 mo MRI and I will see my old crappy neuro to review, and then get a second opinion from to new neuro. You can never be too sure. With all these transitions it's been hard to keep a routine or schedule, and I admit that sometimes I sleep to pass the time when I could be doing something productive, like stretching, or weight bearing. But the estim is new so I've been spending my time doing it. Transitions make me anxious. At times like these does anyone but me like to go to their room and just think. Not even sleep----just think. Stroke makes everything a nonstop transition. It's at these times when I find that dark stillness soothes. And other times when it makes me more depressed. What to do? Oh----My dog Paz---I walked him. He's a puller so I had him just in the neighborhood. I was so happy I could walk him! I've been waiting six months to feel balanced and strong enough to walk him. So I just walked him down the block. Maybe that's why I don't feel so depressed today. My dog feels like mine again. He felt like my moms for a long time. This looks like my dog....:dribble:

So when did you start the accupuncture? I have very high tone, and that is the biggest reason I cant use my hand. Plus i don't have any wrist strength. Were these your problems too?

You are doing a great job, no matter whether Bruce understands or not! Every decision made revolves around him, and you can cry as much as you need to. Life is so tough.

Well, like I usually do, I am writing because I'm depressed. My mom went on vacation and so I've been here alone for this week. The past week I saw friends and relatives, and told them about my doctor saying I will have no functional movement from the hand. I just started the e-stim last week, and I am going to get it for home. This is very good. After my PT shows me how to use it I will say goodbye to her. I've also had my last official OT session with Kristin, and that's sad. She's going to get the Seoboflex dealer out to try it on me, do a demonstration for the staff, and if it feels like it works then I'm going to get OT with someone trained in using it. I have 10 cigna sessions left. I've almost used 60. As you can guess, all these changes are scary. Then my doctor suggested I see a regular therapist to work on my self esteem as I am looking for part-time work. Additionally, my doc ordered an MRI, some labs, and extended my coumadin from 6 mo to a year which is a huge bummer. She's just being safe, but I was really looking forward to not getting coumadin anymore. It's overwhelming. The nice thing about my mom being gone is that I gave myself a whole day to lay in bed and cry a ton. You don't really want to do that with someone around, you know? I feel I've lost a big part of me; I know it's just a hand, and it doesn't work, but to me it's huge. It makes me less than others, and it feels crappy. I am still me, in personality, and that's what I am reminded of, but I'm afraid an employer, or romantic interest won't see past my hand. And my limitations with walking too---I can't walk that far yet. I'm so sick of being a patient! I can't stand it anymore. And I'm sick of feeling scared. Scared of the world. Of going into the grocery store. Of going to the bank. I never used to be like that.

:happydance: So, now that I got the ok to take a break from therapy, It's a little bit of relief that I'm not going to the hospital so much. I can walk the malls every day, go to the library, go to coffee shops. I am going to start to explore the world on my own, without my dear mother. I'm going to go back to my house and face the challenges of living there, even if it's just for a day or two. I need some diversity. I will live my life, even with this disability. I still haven't walked my dog yet, so that'll be a new challenge. You know what they say......plan your work, then work your plan. I just gotta follow that.

Yeah, I just can't take therapy anymore, now that i know that I'm not going to get my hand back......that was the hope of therapy. Now I'm just really sad, grieving. I can't count how many times I cry, but I always feel better. I'm thinking of all the the things I won't be able to do. Some of them I wouldn't do anyway. And some of them are just the basics. I want to find some things to do, and make my own routine. But reaching out to others is a must, because I survive on social interaction. Even when I am depressed, I like to know that there are people out there. My OT suggested that I look in the newspaper, so maybe I'll do that. I just really would like to go back to work. I can't do this same routine anymore, you know?

Hi Katrina Believe me, I have wished I had just died before. I'm so sorry you are going through all this. I stay in bed and cry under the covers. It seems like there is no light at the end of the tunnel. But somehow I make it. I'm not saying I have been through anything like you, but those feelings are universal. I know life is unfair, and that it makes no sense. You have your life ahead, and it's not all tragedy, I promise.

well, I just got back from OT, and I balled my eyes out there. My OT has noticed that I'm having a rough time recently, and she thought it valuable to talk about it. She said that it's normal to come to acceptance with disability, and healthy to get those feelings out. She said you can only stay motivated so long, and then sometimes you need a break. She told me to think about what I want to do, but that we can do less than three times per week. I need to get out and be with people, because that's what I thrive on. It's really hard to accept at 31 that my bodies changed so dramatically in functioning. Life is unfair. I say it time and time again. I heard one tragedy after the other when i was a therapist. Life isn't always nice. You always think it's someone else who's gonna get a stroke; not you. And then you do........and then you spend time wondering what that means. And when you realize it, you're devastated by it. So how do you pick up the pieces? And how long does it take to accept the deficits? It seems so big and overwhelming. And then compared to what others have been through it seems so small. I know you all will say to work hard---but I'm just not there right now. My OT said I stayed motivated for a long time, but maybe I need a break to just live my life. And then I said, "what life." I don't know what my life is anymore. Confusion.

Well I can't write this blog without being honest and admitting that after breakfast and getting what I had to do, mostly in the morning, that I stayed in bed curled under the covers for three separate days. I had an apt with my neurologist, who barely knows me by the way, and he bluntly told me that if I had not opened my hand by now, I will not have functional movement in the hand again. Then the next day, I told my OT about it and she said that she doesn't entirely agree with that. She said I have had slow but steady progress throughout, and although I'm approaching the six month mark (5 mo), that isn't an absolute time frame. I was shocked when my arm moved two months ago, and I'm happy about my arm. But boy they aren't kidding when they call your affected side your weak side----it's so weak, but it can fight gravity. I don't have any grand illusions, and I'm not in denial. I have figured out after the first three months that I wasn't going to be the same. Of course, I was hoping for some functional movement in my hand, but as my OT said, don't rule it out. It's a catch 22; I want to know the outcome so I can grieve that loss, and reach acceptance, so that I'm not fighting reality. I don't want to wait for that day that's never coming. But I don't want negative news delivered so harshly, without more explanation. I wonder if I am the only one who spends the day in the safety of my bedroom, crying for what I once had, and how it was taken away so quickly. Maybe others like to zone out to tv, but not me. I'd rather be in silence. My dad, who moved half-way across the country, hasn't had a clue what to do since this happened. He says the wrong things, does the wrong things. So I told him that what he could do was buy me a kindle, since I only have one hand to read. Well the box comes in the mail; of course I cannot open it, and my mom can barely open it, and she has two hands. What we find inside is an ipad. He said I can download the kindle application for it. I now have to figure out where an apple store is so that they will start it up for me. I know this sounds bratty----but can't he just get me what I wanted. He always gets you what he wants---and it is more expensive! The good news is that my appetite is back. The other news is that I'm going to start looking around for part-time work. I miss being a social worker, and I really have too much time. Improvements are so slow, I would just feel better about myself if I were working. Of course I will be nervous. Going into the workforce with a disability is scary for me. But I am lucky that none of my brain that controls thinking, or speech, or sight was impaired. Also I went on disabledating.com and met a fellow stroke survivor about a month ago in Virginia. He is three years post-stroke, and he makes me feel lucky because he lost his hand, but he used to play piano and organ, and teach children. It severely affects his work. We've spent time together three times, and he's very honest and kind. He's also from Russia, so he has lots of stories, and we are both divorced, so we have that in common. I figure this must have happened for a reason, because I've finally found a good friend nearby, and stroke survivor, and he is supportive and understanding. I'm ever so grateful for that.

Ha ha.....18 pages. That's crazy. I think my OT knows I'm growing inpatient and need something else to focus on. I like walking, so I do that a lot more than the PT home exercises. It's easy to work on the things you like, and they are usually liked because those things are coming along. I can't believe you do e-stim for an hour and a half. My therapist is looking into getting me one for myself, that I can do daily, for the opening of the hand.