lydiacevedo

Sam has a patient that has rather advanced vascular dementia. As life would hae it, I do some compute and bookkeeping work for hiis wife, so I am over at their house once or twice a week. He is a sweet man, but sometimes it is really hard to tell how aware of what is going on around him he really is. Other times, you really can't tell there is much of anything going on with him. Well, I can't. Sam spends a lot more time with him and will tell you that there are some really big cognitive deficites. It scares me to think abot. Cerebral artereorsclerosis is a condition that runs in my family. My grandmother had it, her brother, my great aunt, and the list goes on. They all tarted having strokes, typically in their 50's or 60's, most of which were asymptomatic, several were obvious. In each case, they developed vascular dementia. Now I have been diagnosed with the same condition, though my onset is much younger. I'm barely in my 40's. When I was in hospital this past December, the scans showed areas of "old damage," from strokes that did not manifest symptopms, as well as where several clots had become stuck, which is what sent me to the er. I know tat VASCULAR DEMENTIA IS ONLY A MATTER OF TIME. It scares me. I try to lagh about and tell myself that when it haoppens, I won't know it. so I shouldn't get upset, but I know that isn't true. I saw my grandmther go hrough it. I saw the fear in her eyes, especiually once she had lost the ability to speak. Before she died, she had gotten to hte point where she was trapped in a body was waisting away because it was no longer connected to her brain. She couldn't communicate with us other than the expressiona in her eyes and blinks. That is not how I want to end up. I keep teling myslef that medical science has made advancements in the 10 years since my gradmother passed. Things could be very different for me. Who knows what we will be able to do for stroke survivors in the next 10 years? After all, there are a lt lss fatalities from stroke now than there were 10 or 20 years ago. With tat many people surviving, treatments to help them (us) live fuller, more active lives post-stroke are coming. It doesnlt have to mean what it did for my grandmother. Sam's patient Sam 3 days a week, who helps him with daily living and to "exercise his mind." He is healthy and always happy. There is no fear in his eyes. Who kmows wha it will be like when and if for me. I shoiuldn't get myself upset. Still, sometimes the fer and worry creeps into hte back of my mind.

Generally, my outlook on life has improved. You'd be surprised what a couple of good days in a row will do for a person. I skipped my walk with Sam yesterday. I ran an errand to the bank, then took myslef to the nail salon for a much needed fill-in. It's been over a month and I'm surprised the acrylics had continued to stay on. More than half my nail was new growth. Tonight, after Laney gets off work, she and I will be availing ourselves of the last day of one of Frederick's of Hollywood's bra sales. Yay, a little mother/daughter time! Feeling better about myself, and feeling a little stronger - at least emotionally, if nothing else - I have decided it is time to finalize a few things with myself. So, I called the doctor and scheduled another apoiontment. Things I want to discuss: 1. Since finally getting over this cold, my ears have unplugged and I find I am dizzier and more off balance than I was. 2. I'm thinking that I need to have my eyesight rechecked, because my vision is still a little off. I wear contacts/glasses to begin with, but something is still not quite right. 3. It's time to set a realistic work schedule that I can meet. I really don't think 40 hours is going to work any more. After a while, I just can't read lines of code, or anything else for that matter, because I start to get a migraine and feel exhausted. Yes, part of it may be my vision needing to be corrected, but the part where letters, numbers and symbols stop making sense to me may be something different all together and, frankly, I'm just not into pushing my brain to its breaking point. I'm thinking I can handle about 30 hours in the office, and that is just going to have to be good enough for everyone else. I have to be about what's best for me from now on. So, I feel pretty confident that I am acting in a reasonable manner toward trying to put myslef on some "solid ground," so to speak. Really, if I can feel like I have gotten my feet at least part-way underneath me, I think it will really help me move forward, instead of just "treading water," as I like to call it. I have discovered a few things that look like they will be relegated to the "pre-stroke Lydi." I doubt I will ever dance again. It's too easy to fall. My martial arts is probably not going to pick back up either, at least not outside of silk reeling and Qi gong. I'm going to decide that is just going to be OK. I have some really great memories to look back on in video and still picture format. I can be content with that. I've thought long and hard about posting for a position that would have me speaking to both employees and outside clients a lot more. In the end, I decided not to post for it. It would be a lot more than the 30 hours I'm comfortable working, plus it would be a lot of face-to-face with people. I stutter now, especially when stressed. Subjecting myself to that kind of stress, knowing I have a hard time, just wouldn't be good for me, so I've decided just not to do it. I'm happy with my current position. I am going to convince myself that I simply no longer need to try to climb the corporate ladder and prove that there are no "glass ceilings " that need to be broken. Let some younger woman with a better tolerance for office politics and stress do that. It doesn't have to be me. Yes, I have said "I'm going to decide," or "I am going to convince myself..." I'm not quite at the place where I am totally ok with these choices yet. But I know that they are the right ones for me. I'm still working on accepting myself as I am now, and life post-stroke, but I'm getting there. It isn't easy, and I will probably fight with myself a few more times before I finally settle into it. But I have chosen to stop fighting against the truth of things quite so hard. That just keeps me stressed, frightened and hurting. I don't want to be that any more.

Let me start off by saying that Erin is a dog.....an actual canine. He lives with my parents-in-law. Erin is a Kerry Blue Terrier that they got through Kerry Blue Rescue about 4 years ago. Through a strange set of circumstances, Sam and I ended up dog-sitting him for a little over a month, about 2 weeks after Sam's parents got him. He was skittish - to say the least - didn't trust males, knew absolutely NO commands of any type, was very undernurished, and since he had spent the first 14 months of his life confined to a crate, still weak and undermuscled. He used to cling to me when Sam was up and walking around. Fast forward a month, Erin had gained 10 pounds, was able to go out to the dog park, had learned to play ball and ran like lightening. He was brave enough to sniff males, had made friends with my kids, and loved pigs ears. There is a funny story about that, but I'll tell it another time. By the time Sam's parents came home, Erin was even doing what we call "table checks." He wouldn't jump up on a table, but he would stand on his hind feet to see if there was anything good to eat on the table, then he would beg. He was turning into a "dog." So, since that time, Erin gets very happy and excited when Sam and I go over to his parents' house. Over the years, Erin has even developed a habit "hugging" me when I come over. He stands up, puts his front lags over my shoulders and licks me to say "hello." The first time he jumped up on a human for a treat, he jumped on me. Erin and I are close friends. Then I came home from the hospital. The first weekend home, we had a family dinner at Sam's parents' house. Erin ran out to meet us and stopped cold when he saw the walker. He wouldn't hug me, or even sit near me. He was not in his customary place of under my feet at the dinner table. He'd lick my hand, but that was it. When I progressed from walker to cane, Erin seemed a little more relaxed around me, but still kept a distance. We could tell he did not like the cane. As we are over at Sam's parents at least once a week, sometimes more, we see Erin quite a bit. He has been standoff-ish towards me since the stroke - even when I sit down without the cane near me. He looks concerned and wants to sniff me, but he hasn't wanted to be as close to me as he used to be. Well, last night Sam's dad called and invited us over for pizza. We accepted and drove over. When we got out of the car, we heard Erin whining at the gate of the front courtyard. Typically, he meets us just inside the front door. Sam's dad was with Erin and told us that when he heard our voices as we got out of the car, he got very very excited and insisted on coming out to greet us. I was surprised. I was the one who got to the gate first. Sam was walking behind me to make sure I didn't trip over anything on the walk across the lawn. Erin didn't shy away from me! He didn't jump up and hug me, but he did hop and prance around in front of me, licked my hand and pranced some more. Then he ran in the front door, stopped, turned around and looked at me as if asking me whether I was coming in or not. He didn't even greet Sam until we were all inside the house. Erin usually greets Sam right away. We sat down for pizza and Erin was back in his usual place, at my feet, in spite of the cane. He even did the begging thing under the table where he noses at my right hand, laying in my lap. I gave him some of the "pizza bones," the crust without any sauce or anything on it. Yes, Erin is spoiled. Sam's parents feed him from the table. I usually wait and let him have tidbits in the kitchen as we are washing dishes, but last night I gave in. I was so happy that my friend was behaving more like my friend. After pizza, Sam's mom and I went into the family room to talk about "girl stuff," - bra shopping at Fredericks, which we plan to do on Friday. Sam and his dad stayed in the dining room to talk. Erin came with Mom and me. Now, Kerry Blue Terriers are known for being "quiet" dogs. They typically do not bark. Erin only barks when someone comes to the front door. He vocalizes in other ways, but very seldom does he actually bark. Last night, as Mom and I were talking, Erin stood at the back door, facing me and barked! Then he hopped and barked again. I asked him what he wanted and he looked behind him at the back door. So I asked if he wanted to go outside and he hopped and barked again. So I opened the back door. He ran over to his toy basket and got a ball, then waited for me to go out onto the back porch before he came out. Erin wanted me to play ball with him. It needs to be said that Kerries are independant, thinking dogs who are even capable of solving problems. Had he really wanted to, Erin could have opened the back door himself and gone out. He does it all the time. So playing ball is not the typical human throws ball, dog fetches and brings ball back to human. With Erin, the game is person throws ball, Erin fetches ball, prances around the yard throwing it up and catching it a few times, comes back to person but stops just out of arm's reach, drops ball and "laughs" at you. Have you ever seen a dog smile and kind of make a huffing sould that could be laughter? Erin does it! You have to walk over to Erin and pick up the ball. Half the time you get the ball, half the time Erin snatches it up and insitgates a game of chase. Last night, I threw the ball, Erin ran after it, did the whole prancing thing, but brought the ball right back to me and nosed my hand so that I would take the ball from him. He didn't drop it on the ground for me to pick up. I knew Kerries were intellegent and could problem solve, but was Erin really adjusting our game of ball to meet my balance issues? We played for about 10-15 minutes, then Mom called Erin back in. He ran to the back door, ball in mouth, but stopped and waited for me at the door before going inside. Then he settled down at my feet again and rolled over for the customay tummy rub I give him with my foot while we talked for a while longer. It felt so good to have my old friend back!

I haven't felt like being very active since my stroke. I get around, work part time, and probably do more than I should around the house - no real "probably" about it. But as far as exersizing has gone, I haven't wanted to do anything. I used to be very active - I saw it as a way of staying ahead of the complications of Lupus, a way to prove that I wasn't going to let that condition "win." Then I stroked. Basically, the stroke was caused by..... oh yeah..... complications of Lupus (and a heart abnormality that is congenital)!! Well, hell. It looks like the disease got me after all! AND it will happen again some time in the nebulous future. I hit a mental and emotional stone wall.....HARD! So, the whole "anti-inflamatory diet" and exersize thing seemed like something that was useless to continue doing. Dammit! But, I've neem roaming around StrokeNet, posting on the forums, reading a lot more than I post, and trying to learn to deal with myself now. It really has helped. I've found that I'm not alone, there are people who exactly what I'm delaing with, feeling, going through, and have gotten past where I am. I needed to know that and I'm glad I have everyone here for support. Thank God for StrokeNet!!!!!! It's made me start to feel like I can take a measure of control over myself again. So, yesterday afternoon, after Sam came home, we'd had lunch, sat a while and the evening was starting to come on, I asked Sam to go for a walk with me. He was happy to go. We walked out of our apartment complex and about half-way down the block to the Nazarine church, then home again. Sam set the distance. I set the pace. I think he picked a good distance. I was tired when we got home - not the "oh my god I can't function anymore" tired that I drove myself to over the weekend, but a good "I got up and did some exersize" tired that makes you appatite better and helps you sleep at night. It was a nice walk and I really liked spending a little time away from the house, with just Sam. I noticed a difference about walking with Sam, last night, and walking around the office during the day. During the day, I get exhausted more easily than I do at home or family's homes, especially my right leg. Last night, that didn't happen. I realized that walking around the office makes me nervous. I don't want to trip, get bumped by anyone, have the cane stumble, lose my balance, or anything. No one is there to help me if I have a problem. Walking with Sam, like being in the house or with family, is different. It doesn't matter if I bump into something, stumble, get the cane caught, or anything else. Someone is going to help me and they will make a little joke out of it to break the tension. I'm safe with Sam and my family. I don't feel that way at the office. I don't even like talking to people at the office and do most of my communicating through email or instant message. Face to face, I stutter, lose words and sometimes whole thoughts, use the wrong word for things and sometimes say things that make absolutely no sense. Written, I can edit before anyone sees it. And at home, people will tell me it's ok, stop, take a breath, close your eyes and let it come back to you. Not so in an office where everyone seems to need their information "yesterday." But back to lastnight's walk because it makes me feel like I accomplished something. I DID! I got up, went for a pleasant walk, had some one-on-one time with Sam, got a little exersize, had a pleasant conversation about nothing with Sam, and didn't worry about anything because I was "safe." It was a REALLY good walk and we are going to go for another one tomorrow evening.

I haven't accepted it yet. I fight with that every day. Accepting that I have had a stroke and cannot be the person I was pre-stroke has not been easy for me. Grief is something the women of my family do a little odd. We don't do the bargaining part, probably because we don't typically bargain in every day life. We hold on to anger and frustration and wear them like armor. Acceptance only comes when we finally realize that we have beaten ourselves bloody and dizzy banging against the truth of a situation. We don't accept as much as we surrender, which starts its own mini anger cycle until we can find the "loophole" that lets us trick ourselves into believing that we actually won and didn't ever actually give in. Ok, it'm not the healthiest way to handle things. We are who we are. I'm trying to change because I don't see where I have another option. I'm tired of being angry, hurt and defeated. That's why I post here. I need help taking the first step - accepting myself. And I'm very grateful for all of the well wishes, understanding and advice I find here. It is making a difference. I can blog about it or post on the forums. I can deal with my frustrations and that makes every day a little easier.

I'm going to see if I can pick up that book on audio. Reading still gives me some problems from time to time. Thanks.

I posted on the forum, yesterday, about my daughter Laney moving into her first apartment with her fiancee, and how I had reacted to the change. Trust me, even though I am very happy and excited for her, my reaction was not as positive as it could have been, for me anyhow. I guess part of it is because I feel like I have lost so much, had so much taken away, with having had my stroke. I feel like I have lost who I am and I don't know I will be yet. I don't like unknowns like that. They are uncomfortable at best and down right terrifying at worst. This is somewhere close to terrifying. Now Laney has moved away. Garion moved away a year ago. Now Laney. Logan will be 18 in a few months and he is already chomping at the bit to "get out and experience the world." I should be excatic and prouder than any other parent in the world. I have kids that want to leave home because they can't wait to attack life and make it the success that they kow they can. But I'm not extatic. I'm confused and scared. I'm not "Lydia the Dancer" any more. OK, my prima balerina days have long since been over, but belly dancing and ball room have been a wonderful, comfortable, fantastic rebirth of a dancer's life for me. I can't dance. I can't keep my balance. I'm not "Lydia the Kung Fu Instructor" any more. I'm too off balanace and too easily tired. Even Tai Chi is more of a stamina run that I can manage. Silk Reeling and a little Qi Gong is about all I can manage these days. I haven't tried to be "Lydia the Stained Glass Artist" yet. Frankly, I'm a little scared to try. "Lydia the Artist" in general is having a little trouble seeing things the way she used to and it is affecting my painting, sculpting, and forget throwing clay on the wheel. It makes me sea sick. Now "Lydia, Garion, Laney and Logan's mom" feels a little threatened. They are just about "all grown up." I don't want to be relegated to "sidelines" of their lives. I'm already there for so many other things. I'm still "Lydia the Knowledge Admin" at the office. But I'm only there part time right now, and not sure I will ever be there again for more than 30 hours a week. Going back to a full 40 hours just seems so exhausting and overwhelming. I'm shooting for 30 hours and don't think I'm likely to try for more. I've also given up the idea of advancing past Knowledge Admin. Going higher up the corporate ladder means more time, more emergy and more stress. The stress is the part that I really don't need. I know it has been my idea, my choice, but it feels like a choice I really didn't have any other option but to "choose." My mother is still gently pushing me to apply for SSI Disability and stay at home. Not right now. I can't even think about that without getting upset to the point of a coughing/choking fit that passes for crying right now. I have to try and I'm so afraid I'll fail. Losing "Lydia Sam's wife" scares me too. It's probably an irrational fear. But, I worry that life with me will become too much for him. Sam is a nurse who does in-home care, mostly for brain/spinal cord injury patients. He takes care of his patients all day long, then comes home and has to tread the fine line between taking care of me and letting me do for myself. My God he must get mentally and emotionally exhausted with all of that! I'm afraid I'll wake up one day and he will have decided it's just too much for him. I can't say I'd blame him. He got upset at me for thinking like that when I brought it up to him, but I worry that he got upset because it is something he is already feeling. He's been wonderfully supportive, and still very connected to me, but I wonder. Like I said, it may be an irrational fear. I'm trying to make myself stop worrying about it. Unfortunately, I'm not winning that battle right now. I've already had 1 husband decide living with a wife with Lupus was more than he wanted to do. It makes one gun shy. SO, if none, or only part of those titles end up fitting, who am I? I know, the easy one is "Lydia the stroke survivor," and I should be happy about the word "survivor" in that title. It could have been a whole lot worse. I should be counting my blessings and relaxing to maximize my recovery. Um, ok, in total honesty, how many of us have actually done that? How many of us are lying to ourselves when we say "I have?" I didn't know how to relax before the stroke. Believe me, having a stroke did not give me any spontaneous knowledge about how to do it now. I couldn't turn my brain off before. I can't turn it off now, only now it gets things totally mixed up and sorting through it is an endurance test some days. Other days, I lose things, have gaps, get confused and forget things. I'm tired of apologizing for what doesn't work the way it did before the stroke and I'm tired of not knowing if and when things will be "normal" again. I don't even know what "normal" is or will be any more. I'm tired of explaining that to people. I'm tired of anticipating the fact that I don't look like I had a stroke, so most people forget I did and get upset when I can't do things the way I used to do them, and trying to keep it from happening. I'm just plain tired. And I'm tired of trying to figure out who I am not and who I am now.

Christmas day 2010, I celebrated the holiday with "the whole family" for the first time in more than a decade. I had been estranged from my parents and sister. This was a big family reunion that included my husband's parents and sister, my husband and kids, my sister and her husband, my step-brother and my parents. We had a great day, even though my sister had recently had surgery and was feeling the effects of her pain medications a little bit. I really started feeling close to my family again. The next day, I ended up in hospital with a cluster of embolic strokes, affecting my left brain. Holy crow! How the heck did that happen!? My family rallied around me. Mom and my sister were there every day, as well as my kids and husband. The probed doctors for the hows and whys and celebrated each and every little thing that got better with me. We laughed and we cried together. We told eacjother our deepest fears about what had happened. My mother was determined not to bury another one of her children. My sister was not going to lose me at 42. I was (and still am) terrified I will end up like my grandmother who suffered several strokes and heart attacks until she finally died. They rejoiced when I went home and called daily at first, now a couple of times a week. We had family dinners with the whole family every weekend so that everyone could check my progress for the first month after the stroke. I needed them and they were always there. Sometimes more than I wanted them to be there. My mother is a retired lawyer. They used to call her "the Dragon Lady." My sister is lovingly referred to as "the steamroller." we all have a fair amount of an idea that we are better equipped to manage the lives of those whom we love better than they are. Sometimes they seemed a little overbearing. But I didn't have the strength to argue. My kids, however, did. That lead to a few cross words and some ruffled feathers. I couldn't believe I was the one trying to sooth everyone's egos and calm everyone back down. But where the kids were concerned, if I wasn't getting upset and fighting something, they weren't going to do it either. Things calmed down. Seems like I'd have everything figured out and under control. Nope. No one was seeing what was underneath. I wasn't letting anyone in, not even my husband or my kids. No one knew all the things I have been mourning, all the fears that still enter my dreams at night, all the frustrations, all the impatience with myself and everything else, all the stress that I have been quietly trying to carry around all by myself. I know, I'm asking for another stroke. Let's see if I can arrange my thoughts well enough to get them all out, here. 1. I know things are not the same as they were with me before the stroke. Will they ever be the same? No, not everything will be the same again. I can work on things, but at some point, they will plateau and I will have to learn to accept that. I don't want to, but I don't have another choice. 2. The idea of being physically intimate with my husband scares the living daylights out of me. It scares him too. Will we ever be "back to normal?" Yes, given time. Right now, we will just take things slowly and see how they go. No one has to "hit the home run" right away. We'll play teen-ager again and round each of the bases. The important thing is that we still want to be intimate with eachother. We still like just being in each other's arms, snuggling and watching tv at night. 3. Will I have another stroke? When will it happen? Chances look pretty good that it will happen again. My diagnosis was Cerebral Artereosclerosis, brought on by complications of Systemic Lupus, combined with complications of a Bicuspid Aortic valve. There is no cure for either condition, but they can be managed. No one knows when it will happen again and I can't live my life looking for it. 4. What won't I be able to do any more? a. Well, if my balance doesn't greatly improve, I won't be doing a whole lot of ballroom dancing or martial arts any more. That doesn't mean I can't or shouldn't try to be active, it just means I need to start slowly - like with walking and see where I end up. b. I may spend the rest of my life struggling to get the right words out and I may stutter when I get tired/nervous/upset/etc, but that too should become less of an issue with time. c. I may never be able to swallow as effectively as I once did, but since I have never had a gag reflex, I'm used to accidentally breathing and swallowing at the same time. It's annoying, but nothing I can't handle. d. Hopefully, reading will get better over time and my right eye will quit giving up on me, I'll learn to judge distances better again, and things that come into my sight quickly will stop starteling me, or I'll at least learn to deal with it. e. Since I've had central processing dysfunction for several years now, I already know how to cope with losing focus because of too many sounds I can't understand. Not a big change there, I just get to that "stop the worl I need quiet" place sooner and more easily. I can manage. 5. Exhaustion. That seems to be something I can't shake, no matter how many hours of sleep I get a night. 6. Work- will I ever get back to full time? Maybe not. But as long as I can get to 30 hours a week, I can keep my benefits and insurance, so that is the goal I am going to set for myself. 7. Homelife - when can I put the "Super Mom" or the "Super Wife" cape back on and single-handedly take on everyone else's problems again? Realistically? Never. I need to learn when to let go and I need to understand that just because I am not in control of a particular situation, does NOT mean that life is passing by around me or that I have stopped being a part of my life. That just might be the lesson all of the "Acevedo women" need to learn, I just had life kick me in the head to make me learn it. Well, all of this sounds great here, while I am emotionally on an even keel for the moment. But when things happen, like my daughter moves out, my husband feels the strain of caring for brain/spinal cord injury patients and then coming home to take care of me, or when I have to use the word that I tried so very hard to remove from my vocabulary, "no," I won't do what I have always done, rebel. I know the fastest way to get me to do something is tell me I can't do it. I'm also not very good at patience....or tact...or diplomacy...or anything else that isn't things going exactly the way I think that they should go, when I think they should go. And I know I am my hardest critic. Learning to let go of what used to be and accept who I am now/will be is not going to be an easy task for me. I know that. Accepting that I have that task ahead has not been easy for me. Grief is something the women of my family do a little odd. We don't do the bargaining part, probably because we don't typically bargain in every day life. We hold on to anger and frustration and wear them like armor. Acceptance only comes when we finally realize that we have beaten ourselves bloody and dizzy banging against the truth of a situation. We don't accept as much as we surrender, which starts its own mini anger cycle until we can find the "loophole" that lets us trick ourselves into believing that we actually won and didn't ever actually give in. Ok, it'm not the healthiest way to handle things. We are who we are. I'm trying to change because I don't see where I have another option. I'm tired of being angry, hurt and defeated.