lydiacevedo

OH wow do I know how you feel. Between feeling like a landed whale, and being scared silly that I might have another stroke, Sam and I are facing the same situation. He, too, is wonderfully understand and supportive. Everyone tells you that weightloss is "simple mathmatics," take in fewer calories than you use in a day. Yeah, I wish it was that easy. Some of teh medications I am on make losing weight very difficult too. The weight does come off, but it does it at a glacial pace. All we can do is keep working at it. It will happen. Unfortunately, not like it did when we were in our 20's. I feel you, Smittly. And I'm here when you need a shoulder!

I remember when the kids got to the point where they were taller than I am. I'm the shortest one in the family at 5' 2". The boys used to think it was funny to put an arm up on my head and lean on me. Monsters! Family is great and had I to do it all over again, I would have stayed home while they were younger. Now that they are almost grown up, I'm happy I have a job to go to. It would probably be easier for me if I had a mindset where I could stay home, and sometimes I think about it, but for right now, I need the 5-6 hours I spend 5 days a week outside of my own 4 walls. Families and, especially, children are some of the greatest things Heaven can give us. Enjoy yours!

I get the nose bleeds too. According to Dr. Mike, they are stress related. Capilaries lay very close to the surface in the nose and sinus cavities. Even a slight raise in blood pressure can cause them to bleed. Since we are pretty much all on blood thinners and medications to prevent our platelets from sticking together and forming clots, the nose bleeds can go on all day. If they are very bad, filling more than 1 tissue in a short period of time, you should see your doctor or go to the er. Otherwise, I have found that if I dip a Q-tip into ice water and put that in the area of the bleeding, touching the walls of my nose, it helps to get it to stop.

That is, basically, the path of stroke care, at least here in FLorida, but I would think country wide. The problems don't really start for us until time to leave the acute-care hospital to either home or a rehabilitative hospital. What we end up facing is the "guidelines of the insurance company." Different insurers have different services that they cover, at different rates. Survivors/caregivers and families are, often times, thrown into an almost unsurmountable financial debt, trying to get the best possible rehabilitative care. Our imediate care is great at saving lives. Unfortuantely, out follow-up and continued care often falls short.

I had to take a minute to express myself about the people here on Stroke Net. Everyone I have met, read, chatted with, etc. has made my recovery and living post-stroke easier to face, therefore easier to do. It is truly comforting to me that so many people can take a few sentences, a few phrases, a few words and completely ignore the spelling and grammar mistakes, focusing like a laser into the feelings, fears, concerns, or excitement of what I am trying to say and offer unconditional support, comfort, advice, true empathy, and a sense of "belonging." I honestly feel as though I am never alone, since joining Stroke Net. I can simply turn on my computer, type what I am feeling/experiencing into a forum post or blog, and rest assured, before even a few hours have gone by, at least 1 person has offered their reply. Everyone here has absolutely been the answer to a prayer. I can't adequately express the hope, comfort, insight, strength and courage all of you has given me in the short time since I became a Stroke Net member. I love the way you have been excited with me when I meet a goal, have even the smallest success, or speak about an upcoming event. I am comforted by your words of encouragement, support and acceptance when I fall short, show fear or concern, rage against life, or want to hide away from it. You have given me many things to think about, many good ideas to try, many words to help explain life to others, not to mention the courage to try things like dancing with Sam. For all of this, I am ever grateful and hope that I can go at least a small measure of the same for another survivor and/or caregiver. There is a very big, very warm place in my heart for all the members of Stroke Net. You have very quickly become my friends, and people I love and hold very dear in my heart. Thank you, one and all!

Yesterday marked my 13th anniversary with the company that employs me. When I started working here, I was providing technical computer support to business professionals in the accounting industry. No one thought I'd last even a year. By year 5, I was training agents to support Microsoft products and doing web design on the side. By year 7, I was working on the knowledge databases and creating on-line training modules, which is what I still do today. It's something I really enjoy. I get to be both technical and creative. I basically created my job myself on the "find a need, fill a need" principle. When it showed added value to the company, they made my position official. Without sounding proud or bragging, I can honestly say that there is no one else in this company who knows exactly how to do my job. That may be part of why my boss is being so understanding about my getting back to where I was before the stroke. Nothing got done in the time I was in hospital/at home, because no one else knew how to do it. It may also be why the office is willing to allow me to continue to work 30 hours a week and keep my insurance and benifits, where they would have normally dropped some one down to 20 - 25 hours and suspended their insurance/benifits. I talked to HR about my work hours yesterday and was told that I could do the 30 hours and would keep everything, if that is what the doctor decided was best. I happen to know that is what he will say is best, I just need him to fill out the paperwork. So, happy anniversary to me! I've done what no one said I would be able to do and will e able to continue doing it for as long as I want to.

There is so much of my artwork hanging in my daughter's house, my parents' house and my in-laws' house, that it is a constant reminder of me as an artist. Lately, it's been nagging at me "when are you going to create again?" I'm not expecting to be exactly the artist I was pre-stroke. I'm just hoping I haven't completely lost my talent. It doesn't look like I have, so far. I'm kind of excited to see where I take myself now.

I have been making several mistakes where typing/spelling/grammar/language are concerned, at the office. Not real happy about that, but determined to try harder. I don't want people to think that because I had a stroke, I can't properly do my job any more. I know there are a few who already believe that and would like nothing more than for me to prove them right. Once can't work at the same company for 13 years (as of today, in fact!), forge a career for oneself, and others not be less than supportive of that. There will always be some one who thinks that theirs should have been what mine is. Fortunately, the people with the ability to make calls concerning employment are very understanding people. They are giving me plenty of time to make my mistakes, learn what I need to do to avoid them, and succeed, as is my typical way of learning. But there is still some concern. For my part, one thing I have talked to Dr. Mike about is the fact that vision seems to go blurry or doubles in my right eye, if I am reading/typing/coding for more than about 90 minutes. If I try to press through that, letters/numbers/other characters stop having any meaning to me at all. I simply can't read....period. Well, the not being able to read thing is "all in my head," litterally. It is a problem of left-sided stroke and happens when my brain gets tired. It may go away over time, it may not. The best thing I can do is use losing the ability to read as my brain trying to tell me that it needs a break, and take one. The vision is something a little different. Dr. Mike is referring me to a neuro-opthamologist. He will be able to tell where the deficit is, why it is and help me learn to compensate, or prescribe treatment. Dr. Mike says that the damage is done. We can't reverse it, but we can manage it and try to prevent it from getting worse. Hmmm, where have I heard that before? Well, yesterday, I put myself "to bed" early, meaning I went to my room, shut the door, locking out all of the cats, turned on what I wanted to listen to on tv and climbed into bed with a sketchbook and a set of pencils. I wanted "to be alone now." Automatic drawing, the situation where you don't "try" to draw anything, just put pen to paper and let whatever is going to come out of your hand, has always been the way I overcome blocks and spark creativity/imagimation. It's a pretty successful way. Last night, a few lins and swirls down on the page, and I stoped to look at what was there. I decided I didn't want to try to make a "picture" out of it, but use it more as a study in shading technique, so I started putting in shadows and highlights, just letting it become an abstract image of shadow and light. It felt good. I worked on it for about an hour or so, until I noticed the double vision thing again, then stoped for the evening. There was a time, after my grandfather died, that I did not do any artwork for a year. Then, when I started working as a graphic artist, I went 2 years without ever doing anything artistic just for the pleasure of doing it. I don't want to let a whole lot of time go by before I start to create again, this time. I want.....no, I need to know that I can still be an artist. It's a little part of who the old me was that I want to hold onto in the new me.

Last night, while Sam and I were catching up on tv programs we had on the dvr, I found myself, pencil in hand, starting to create repeating patters of shapes on graph paper. It felt a little odd at first, but I ended up filling up 4 sheets, no 2 sheets the same shapes. Frankly, that is the first anything creative I've done since the stroke. I know my stroke was left-sided, so I am right-side affected and am left-handed, so it shouldn't have been a problem. I just haven't felt much like being creative, which is frustrating Sam. He gave me a beautiful set of brand new stained glass tools for my birthday, about a month before my stroke. With all of the holiday stuff going on, I hadn't had time to use them before Christmas. Anyone who has looked at my profile knows what happened the day after Christmas - strokeville! So, I'm thinking I'll try the hand out on something a little more complicated than graph paper. Maybe I can get myself to the point where I feel comfortable with pliers and a glass cutter in my hands, some time in the near future. Probably, I'll start with a paintbrush. It's less likely to be dangerous.

I don't know the words for things either. Other things I call something entirely different. My family just asks me "what does it do?" After I explain teh purpose or action of a thing, they "ok" and move on, if I called it the wrong thing, or tell me what it is if I don't have a word. I'm only 2 months post-stroke, so I'm still learning what has changed and what has not, too. While your family tries to ignore your stroke, my family is scared to death that at any minute I am going to have another one and die. I hope that, eventually, everyone comes to a middle point of understanding. I use my blog to vent when things are less than I want them t obe, celebrate when things are good, help myself remember because my short-term memory can be a little flakey, and keep up to date on what other people in "strokeworld" are up to. Sometimes, reading other people's blogs gives me hope and determination. Keep blogging. We're all here to help eachother.

I had intended to sleep in a little bit on Saturday morning. Well, my phone started ringing at 9:00 am. First it was my mother. She called to tell me that she was very ill and wouldn't be able to make the ball. She didn't even sound like my mother. I wished her a speedy recovery, told her I would stay home and rest too, if I were ill, told her I loved her and hung up. Next it was my mother-in-law. She wanted to tell me about my mother. Then, she called back again to let me know there was a big estate sale going on 2 doors down from her and she saw some items that Laney and Tom may want for their new apartment. She had set adside $X for the kids to spend. Then my father-in-law called to tell me the same thing. OK, I called Laney. She came over and Sam, Laney and I drove over to the estate sale. She did find a few items that she needed, a coffee table, kitchen table & chairs, and a few knick knacks that she felt were charming. She drove home again with her things, and Sam and I stayed to visit with my father-in-law and Erin, my furry buddy. Fast forward to Noon. Sam and I left Dad's and raced home so Sam could get ready for his Saturday afternoon Tai Chi class. It really isn't good form for the teacher to be late. I chose to take a nap. Then the phone rang again. It was Sam's Dad. Did we know anyone who would like to take my parents' place at the ball? The tickets were already paid for, and it seemed a waste to have empty places. So, ok, made a few calls. Found a couple that was interested and available, called my father-in-law back and told him, then took that nap. Up by 4 and starting to get ready. I decided to wear the gown I wore 2 years ago...if it still fit. If it didn't, I had a back-up. Sam helped me into teh gown and, would you believe it, it fit better than it had when I wore it 2 years ago!!!!!!!!!!! I was extatic. The gown is a color somewhere between purple and burgandy, so I accessorized it with the pink pearls my grandmother had given me on my 16th birthday. Sam wore the suit he had worn when we got married and, as usual, looked AWESOME in it. He really does clean up well and I very much appreciate him in a suit. Off we went. Everyone met up in the lobby of the hall. Introductions all around. A lot of people there, a lot of people coming up to us to say hi and ask how I'm doing. OK, leg started to tell me I needed to sit down, so I asked my father-in-law if we could go ahead and go into our table. He ushered all of us into the ball room and to our table, all the way in front. Well, I got my exersize for the day! Starters were being passed by waiters and waitresses. Unfortunately, they were all shellfish. Sam went off and found me some lovely fruit, cheese and crackers. Have I mentioned that I am married to the most wonderful man on Earth? More people dropping by the table to say hi, etc. Then the oprogram started. There are teh typical thank you's and little awards while dinner is being served. This year was a ceasar salad, followed by a beautiful chicken marsala, very tasty. Desert was chocolate cake with a chocolate ganache filling. After dinner came the "Grand Pramanade!" It's a tradition at the Lincoln-Douglass. Everyone goes out to the lobby, pairs up, then processes in to the stage where they split, going to both sides, and are handed swords (the plastic pirate type swords, no live metal here), and they walk back down, rejoin as pairs, process back up, cross swords, everyone goes through, back around, drops off the swords and goes around 1 more time. The whole thing is rather silly, especially since the theme to Star Wars is being played the whole time, but then, if you can't dress up in suits and ball gowns and act silly, when can you? After the Grand Pramanade, we break into the Electric Slide! That too is a tradition. Well, I skipped the Grand Pramanade. Our Priest, who is this tiny little black woman (remember, we are Episcopalian, so clergy can me either male of female), came and asked if she could borrow Sam for the pramanade. I said by all means! Sam is her favorite person to pick on. Probably has something to do with his father being the retired priest in residence (we also let our clergy marry and have families), his mother is on the vestry, and I am the director of Christian Education. Anyhow, off they went! The electric slide over, the real dancing begins. It's fun just to people watch and I contented myself with that for a while. Sam (wh is, remember, the most wonderful husband on Earth), asked me if I wanted to give it a try. He promised he'd hold me up, so I didn't even need my cane. He's so sweet. We danced most of one song, then I wanted to sit back down. My right arm and leg were starting to do that burning thing that tells me I haave done too much in a day. We talked and people watched the rest of the evening and had a really good time! Midnight and this Cinderella knew it was definitely "pumpkin time." Back home, into bed and out almost the second my head hit the pillow. I wish my mom and dad could have been there. We had a great time!!!

Our church hosts the Lincoln-Douglas charity ball every year. The proceeds of which go to Corner Stone Kids, a private school/Day care for low income families in Tampa. We go almost every year. Last year, we skipped the ball beause Sam was recovering from testicular cancer surgery. FYI- a year later, he is cancer free and back to teaching Tai Chi. This year was nebulous for us. We weren't sure if I was going to be able to go, let alone want to go. Sam's parents bought our tickets any way, "just in case," and Wednesday night, his mom called to see if we felt up to going or not. I told her I would talk it over with Sam and call her back. It took all of about 5 minutes for us to decide that we did want to go, and though I would probably skip the "pramanade" and not do a whole lot of dancing, I really did want to go ahead and go anyway. So I called his mom back and told her to count us in, then called my mom to make sure my parents had the time and place for tomorrow night too. We are all going, Sam's parents, my parents, Sam's sister and a date, Sam and me, and Uncle Charles and Aunt Larry. A full table of 10! It sould be a great evening and I am starting to get excited about it. I chose to go ahead and go because I thought Sam and I both needed it. We need an evening to dress up, go out and be with friends and family, without focusing on teh challenges of every-day life and my recovery. I'd have dragged him to it last year had he not been on so many poiods for pain. I've been walking and have started a light weights program to improve my right side. I'm feeling more like myself, and the Lincoln-Douglas is one heck of a party, one that should not be missed!

I went ahead and did it. I took Sam for a walk last night, even after a 30 minute work-out in the fitness center at teh office earlier in the day. I think I was hopped up on endorphens or something. We walked our usual rout to the Nazarine church and home. As usual, I set the pace, and I am NOT training for anything, so the pace is casual. It's just to get out, get air, and get moving. Sam noticed I was leaning a little more on the cane toward the end of the walk, so he looked me in the eye and said "nappy time," which is code for when we get home, you need to lie down and rest." For once in our lives, I didn't argue. I spent about an hour and a half with 1 cat curled up by my left ankle, and another cat curled up on my right shoulder, nuzzled into my neck. Vivi is a little bit of a co-dependant cat, and her humans, Laney and Tom, have moved out. She will follow in a few weeks, once they have the $450 in pet deposits and fees. In the mean time, she is up my......well, you get the picture. About the time I was waking up again, Sam told me Logan (offspring #3) had called and needed a ride home from teh high school. He spends most of his days there, designing lights, sets, etc. for the various performances (he goes to a performing arts school), or setting up and programming the light board for performances from other departments, as well as public rentals (when you rent the Blake theater for a function, you also rent a "techie" since their light board is a brand new, state of the art, concert combo board and not just anyone can run it.). I asked Sam if he wanted company, so he waited for me to disentangle myself from teh cats and get ready. Logan back home, my best friend called and asked for Sam to come over and hive her a back mannage. We said ok and Logan told us not to worry about dinner, he could fend for himself. Off we went. Sam worked on Jeani's back for about an hour while Darrell, Jeani's husband, and I hung out in the living room. Darrell and I work for the same company, but in 2 different departments, so we had plenty of office gossip to go over. Massage over, Sam and Jeani sat down in the living room with us and we all hung out til about 11 pm. Good thing Jeani and Darrell live close to us. It was "way past pumpkin time" for this Cinderella by the time we got home. So, this morning, the right arm and leg are burning and tired. I'm slower to move than usual, and I am very grateful for my buddy Antron, who has been happy to help me out this morning, walking to the printers, etc. I'm just plain tired.

FLorida warmth is right! We've been expecting days in the upper 70's to low 80's all week and the weekend doesn't look too much different. A small chance for rain on Sunday, but they say we should have nice weather for your trip. Welcome to the "Sunshine State!"

So, Dr. Mike and I talked about weight conditioning to regain some tone in my right arm and leg, at my visit yesterday. I'm really trying to do what I need to in order to help my recovery. Luckily, there is a fitness center in my office with a multi-station machine. Even better is that I have a "fitness buddy" at the office. Antron and I are friends, and we have been for about a year. We sit next to each other and are both "support," so our schedules are pretty fluid. We also cheer eachother up when we need it. I told Antron about the dr. visit yesterday afternoon and he told me he'd go to the fitness center with me, because no body likes to go alone. So, we made a "date" to go work out today at 12:30. It pushed to 1, then it got pushed to 2, then 2:30. Just office stuff. So, we just finished our work -out. He helped me set the weights on the machines to their lightest (and didn't laugh at me because of it ). I worked on my right arm and leg, letting that side do most of the work. My arm and leg are now tired and burning a little, but not badly. I can work on my balance next time - Monday. That will be good. Sam and I are supposed to take a walk tonight, but I'll have to see how I feel when I get home. My schedule will be fitness center Monday, Wednesday and Friday, walks Tuesday, Thursday and Saturday, once I get everything scheduled. Right now, it's a little wonky. Sunday will definitely be for "doing nothing." I'm feeling better about the whole situation. I have a plan of attack. I may not make every day, Monday through Saturday at first, and I may be super tired after the fact, when I do, but I have a plan of attack and I need that. I am a goal oriented person. One of the things that has been making me crazy and depressed is not having a goal. Now I do.

I feel so much the same way that you do. I lost my identity and am trying to find the post-stroke me too. I deal with co-workers who run the gambit from wonderfully supportive to down right ignorant and hurtful. AND, I blog asa a way to deal with my feelings and my life post-stroke. Welcome to Stroke Net, welcome to the blogs and please know that we are all here to help and support each other!

I have mixed feelings about this. I understand, given the fact that I have gone back to work, I am way ahead of the curve. I guess, part of my being such an "A" personality, I wanted to be farther ahead than I am. I actually saw Dr. Mike today, instead of the P.A., like I normally do. Dr. Mike says I am to schedule appointments with him from now on. He is taking over my care. Sam thinks that is the best thing his office could do for me. OK, I can deal with that. I like Dr. Mike. I have even changed insurance companies and paid out of pocket, in the past, to be able to continue to see him. So, fine. We spent about half an hour catching up on the stroke and what has happened in the past 2 months since then. A lot of flipping back and forth through my chart, asking questions and taking notes. Then he did the typical physical assessment. He isn't really happy with the amount of weakness I still have in my right hand/arm. The leg is better, but not where he wants it. So, I am off to the weight room 3 times a week to rebuild tone. Light weights, moderate reps, I'm sure everyone here knows the drill. He does like the fact that Sam and I are taking walks 3 times a week. He says it's good for openers. We revisited the coughing thing. Dr. Mike said that one of the medications I am on, and its whole family of drugs, have the side effect of causing a cough, so we are going to see if it abates when I am no longer taking the enalipril. Fine by me. He also wants to see if the memory issues, the stuttering, the crying, the lack of emotional control and even some of the using the wrong words for things can be helped by doubling my Zoloft dose. Ok. Then there is the balance issue. Well, that isn't improving the way he would like to see. I can't bend over and touch my toes, I pitch forward. So, no driving until he reassess me in a month. Shoot. Also, I may want to consider going back to the walker. It is way too easy to send me off balance and if I am going to be in the office, I need to be careful of that. I haven't said I want that, but I will think about it. Well, we'll see what the next month holds. I don't have to like it, but I have to understand that things are different now. Acceptance is something that I am still working on. Getting better, but not entirely there yet.

I tried. I really tried not to let that person in the break room bother me. Unfortunately, I still don't seem to have a whole lot of control over my emotions. As soon as I made the last post, the one where I thought I was doing so well and had found a better way to deal with the situation, a co-worker asked me a question. As soon as I opened my mouth, I started stuttering........BAD! That is what happens every time I get upset, excited, anxious, angry, sad, etc. Either that or I start coughing to the point of throwing up. Dammit! I wish I had more control over my reactions! Ok, I need to calm down. I need to get back on an even keel. I'm writing about it so it is out and won't bother me so much. Step 1 complete. I put a music cd in my computer. Music helps me relax. Step 2 complete. It's just a littloe time now. On a side note, my boss heard the stuttering and came over to my desk to see if I was ok. I explained, as best I could, what had happened and that this is just what happens under emotional stress. He was very patient, listened intently, then asked me if I needed anything or there was anything he could do to help me. He also said he would talk to HR about the incident if I wanted him too. It still surprises me, sometimes, how understanding and supportive he is. I don't know of too many people who could say that about their boss. I'm thankful I can. OK, I'm starting to feel like my engine isn't reving so hard or so fast any more. This is helping. I'll be ok.

So, I wandered my way into the break room for a sandwich this afternoon. Nothing particularly interesting about that. I do it every week day around 11:30 or so. I had to bite my tongue to keep quiet as I passed one table of co-workers, however. Yep, still walking with a cane. Still having balance problems. This can make life interesting when retrieving items from a vending machine. Sometimes it takes 2 hands, which means I have to lean the cane against the machine, get my selected item, juggle everything into my right hand/arm, and tak hold of the cane, before carefully turning myself around to walk to a table or back out of the break room. I tend to eat lunch at my desk so...... As I was manuvering my sandwich into my right hand, I heard one of the females sitting near me ask a friend of her's "oh my god, I know she told everyone she had a stroke, but when she going to stop milking it? Get over it already!" I SO wanted to say something back, but kept my composure and managed to walk out of the break room without confrontation. Good on me! I ranted on the message boards about people who have no point of reference when it comes to strokes or stroke survivors. I don't need to rehash it here. I am trying not to let it *beep* me off when people say ignorant things like that. Getting angry or upset will only make my day more difficult. I don't need that. A stroke isn't a cold. It won't "go away" after a while. The effects of a stroke are life long, as I am learning, and can be mild to catastrophic. I thank God my effects are pretty mild. I'm pretty functional and pretty independant and only 2 months post. No, I have decided to try to educate people, instead of getting upset at them. So, I ordered myself a stroke survivor t-shirt and I plan to wear it every Friday at the office. Friday is jeans/t-shirts day at work. Hopefully, after reading the back of the t-shirt a few times, it will make people search the web for information, or better yet, visit us and read some of our stories/blogs/posts/educational materials/etc. That seems like a better use of my energy than getting upset. I know the t-shirt is being shipped priority mail. I hope it gets here before Friday so I can wear it this week. If not, next week will do just as well.