lydiacevedo

Sam picked me up from the office yesterday to take me out to the University of South Florida Eye Institute. I had an appointment with a neuro-opthomologist. Neither one of us had any idea what he was going to do to me, so I was a little tense. I don't like surprises, not knowing what to expect, or not having a choice in matters. That has been me life-long, but I seem a little more so after the stroke. We parked and walked up to hte building. I had my "rollie" with me (I feel safer using it and take it everywhere with me. It felt like a step backward from the cane, but now it feels like a little more independence), and was happy to see that there was a ramp to walk up instead of having to try to navigate the 4 steps up to the doors. Sam didn't notice it until a headed toward it. He isn't used to my using the rollator yet and not needing his help up and down steps, but he's getting used to it. Inside, we registered and sat down to wait. We weren't waiting long when they called me. FIrst test was like going to my regular eye doctor, can you read this line of letters, good, now the next line......we all know the drill. Separating eyes, I started to realize just how much I was not seeing from my right eye. I read another 4 lines smaller with my left than with my right eye. My spirits started sinking. Second test was a vision field test. Look at this little light and click when you see a light flash in front of you. It seemed like testing my right took forever. I started to get tired and get a headache, so the tech let me rest a few mionutes before testing my left eye. That went smoothly, quicker than testing the right eye, and I wasn't as tired afterwards. I also realized Sam and the tech were talking about my tests, though I do'nt think they realized it. They mentioned, to each other, that my responses were much quicker on the left side and that "straight ahead" in my left eye was shifted towards the right - meaning that I have gotten used to compensating for my right eye. I got a bigger sinking feeling. Third test was without my contacts or glasses - read this line, which is better, 1 or 2 while they flip and turn lenses infront of your eyes, basically reading what my prescription is. Nothing weird and this didn't bother me. My right eye has always had a stronger prescription than my left. FInally, the doctor comes in with a resident student. They ask if they can dilate my eyes. Ok, fine, I'm used to this too. A little drop in each eye. It stings the daylights out of my left eye, but not my right eye. Weird. 15 minutes later and my eyes have not dilated, so another dsrop in each eye (not outside the scope of normal for me). It stings the left eye again, but not the right. I mention it to Sam who says that is weird, but not outside of normal. I think he is trying to keep me calm. Finally dilated, they look at my optical nerve on each side. Left side looks normal. Right side does not. They mention something about it looking tilted and there being some sort of atrophy. Ok, now the sinking feeling is coming back. We sit and wait a few more minutes, then the doctor wants to go over my results with me. Aqui va! I have the natural, normal blind spot that most people have in the lower left outside range of my left eye. Nothing unusual. Ok, we started withthe good news. HOWEVER (here it comes), I have a blind "spot" that encompasses the entire outside quarter of my right visual field (HOLY CROW what is this guy telling me!?). Then he proceeds to ask if I had problems with both eyes at first but that my left eye had corrected itself. I tell him no. My left eye has always been fine. "That's very unusual," he says, "if you had had a left affected stroke, I'd have expected to see these kinds of tests, but it is not only rare, it is almost impossible to have these results from a right-side affected stroke." So, what is he telling me, I'm faking the tests? Wow, that's talent. I didn't know I could affect when and how my pupils dilate due to light. No, that is not what he is saying, just that he did not expect to see these kinds of results. He'll look at my scans, but he is willing to bet that I had multiple strokes in more than one area and did I have problems with my balance after the stroke? Yes, that is why I use a rollator. I still have balance issues. That makes sense to him! Oh good. I'm not that much of a freak. OK, look at the scan results from the hospital, type up all of his findings, and send everything over to Dr. Mike. In the mean time, he wants to see me again in 2 months and I am not to drive because my depth perception is way off and I don't see things coming at me from the right side. Maybe, the next time he sees me, I'll have made some improvements, we'll see. I'm starting to think that I am not going to get my driving priveledges back. That bothers me because it is a loss of independence. Independence seems to have become majorly important to me since the stroke. I feel like I am losing it and can't get it back. I don't like that........... I really don't like that. OK, eye appointment over, Sam helps me into the car as my eyes were not only behind sunglasses, they were flat out closed because it was too bringht out, and off we go to our friends, Greg and Terry's house to do our taxes. Greg is an accountant and always does our taxes. Sam and I file separately every year because of the kids and their death benifits from their father. This year, we itemized my return because of all of the medical bills from the stroke. Took longer, but we got it done. Sam can still pretty much do simple taxes, so his took less time, no itemizations. Taxes done and filed and return amounts to be direct deposited. Whew. That is a relief. We sat and talked with Greg and Terry until about 9:30 when I was just too tired to be out any longer. The hour drive home from Riverview to Tampa was quiet, not much conversation. We were listening to a blues station on the radio, music that Sam and I agree on. I did, of course, jump a little bit when cars turned into traffic on my right side, and I sware that Sam doesn't start breaking until he is right up on the car in front of us. I've been doing that for a while now. Sam just put his hand on my leg and said "it's ok, I got it, we're not going to hit anything." Usually he gets frustrated at me and snaps about how he has it and to let him drive. I guess knowing, now, that I react that way because I can't see the cars until they are right next to us, and that I can't tell how far away traffic is, Sam does'nt think I am commenting about his driving, I just don't see things like "normal" people. Looking at all of this, I am starting to really think that medical retirement is my best course of action. I'm still glad I tried to go back to work and things as normally as I could, but, yes, I think my mother was right when she said I needed to get disability and just not worry about it any more.

I've been to 3 different performances of theirs. We love them! They are coming to Tampa right around our 3rd wedding anniversary. We plan on going again. If anyone is ever in Florida, around the Orlando area (where Disney World is), they have a resident show in Downtown Disney. It is wonderful!!!!!!!!! I also encourage anyone and everyone to go.

I'm not even sure how to start this off. I had my monthly appointment with my GP. It didn't go well, but it didn't go badly either. It just didn't go the way I wanted it to go. I'm still not allowed to drive. My balance is slightly improved from this time last month, but not good enough for Dr. Mike to give me the ok to drive yet. We'll check again next visit. My ekg and blood pressure were good, so I can stay off the enalipril. I'm also having coughing fits much less often, so Dr. Mike says that much of the coughing was a side effect of enalipril, and that my swallowing reflex is showing improvement. Hopefully it will continue to get stronger. My right hand strength is showing a little improvement, which is good. He told me to keep up the work I'm doing at the fitness center and with the resistance ball. It should continue to get better. Walking wit hthe rollator is helping my stamina, which is good, so keep using that and not the cane. I prefer the cane, but I can live withthe rollator. Basically, keep working out in the fitness center, keep taking walks, and keep coming back every month for a follow-up to check on things. It wasn't a bad follow-up. I just really wanted to have the ability to drive myself around again. I made it out to the first Worship Committee meeting since I had the stroke last evening. I dropped so much when I had the stroke - Sunday School, Lay Reader, Eucharistic Minister, Worship Committee, Stedwardship Committee, Ministry Education, you name it. This was my first attempt to get back to any of it. I'm sorry to say that I'm not even attemding service regularly right now. If I sleep throughteh Sunday morning alarm, Sam just shuts it off and lets me sleep. That's the deal we have. If I wake up, I go, if I don't, then I needed to sleep and I do'nt go. I'm not ready to tackle running teh Sunday School or all of that yet. That will still take time. But at least I've made a first step.

My doctor thinks that I may be experiencing a bit of this myself, especially because I have burning pain in my right arm and leg (the affected side). Try this link. It does a pretty good job of explaining what is going on and what can be done about it. http://www.painclinic.org/nervepain-centralpoststrokepain.htm

Yes, I did take it into Walmart and I am able to fold it and put it in the car on my own. The one I have is an ultralight rolator made by Medline.

hydrotherapy has been used for all sorts of mediacl challenges and has shown great results for all of them. When I was dealing with a great deal of joint and muscle pain, linked to a lupus flare, the doctor had me in hydrotherapy 3 times a week. It made a reall difference. Without it, I don't think I would have gotten back up out of the wheelo chair I was in. I'm so glad William is reaping the benifits of it too. Once the pool where we live is open for the season, I'll get back in it a few times a week myself. I really enjoy it.

MY rolator came Thursday. We picked it up from the UPS depot (they never deliver to our house at a time when any of us are home, sowe have it held for pick up) and brought it home. I put it together without Sam's help. I figured if I was going to use the darm thing much of my day, I was going to tackle it from the getgo. It really wasn't all that difficult to do. Friday morning, I went to work with it. It does make things easier in teh break room because I can carry items in the little basket, or sitting on the bench. That meant I needed less help. Garion came to pick me up on Friday afternoon. Normally, when 4:00 rolls around, I'm done, pretty much for the evening. Well, Friday, I was still feeling like I had some energy, so I didn't mind when Garion asked if we could stop off at Walmart. He wanted me to show him what the stain/oder remover we use when the cats go outside of the litter box, because our house does not have the typical scent that says "a cat person lives here." It's the only stuff that we have found that really works and works well. Fast forward about 45 minutes to wghen we got to the house. I was a little tired, but not bad. Garion hung around for a little while, then went on his way. I settled down on the chase lounge to doze before Sam got home from work. Friday is pay day for Sam every week and me every other week. We both got paid last Friday, which means doing the "big shopping" at the membership club. Normally I will put it off until Satureday or Sunday, because I am too tired to do it on Friday. This time, I didn't. Sam puttered around the house for about an hour, then we went to do the big shopping. An hour or so later, when we were leaving the membership club, I was starting to get that "wiped out" feeling. Back home around 9:00, I was finally "done for," and Sam put me to bed. So, using the "rollie," as I have decided it is called, gave me another 5 hours I wouldn't have had of active time on Friday. That doesn't suck. Saturday was just time at home day, which was fine. Sunday, we had dinner with my parents, played a game of Majhong, then several games of spades and got home later than expected. Today, I'm a little tired from getting to bed after 2 am, but I'm not the kind of tired that I have been. Maybe I pushed too hard to get around just with teh cane.

The back story: My father passed away when I was 3 and Larra was 1. By 8, we were away from Puerto Rico and in hiding from my father's family. There was a lot of bad blood between my mom anfd my father's parents. At 18, I chose to make contact with my father's family. It was very much a double-edged sword and I got cut pretty badly. I also did everything I could to protect my sister from being treated the same way. Fast forward to last year. The "Old man," as we referred to my Grandfather, passed away. He'd been in ill health for several years and had finally given up teh fight. Before he died, he had a new will drawn up. In it he explained that he had made many mistakes that caused him to miss out on the only living reminders of my father, my sister and me, and that to try to make amends for that, he was naming Larra and me as heirs in full standing, and deviding his estate in fifths - my father had 1 brother and 2 sisters. He made sure that any contest to the will automatically disqualified the contestant from inheiritance, to keep his son and daughters from fighting Larra and me being named as heirs. Fast forward again to today. My mother gets an email from the lawyer that is doing the probate that all they are waiting for is the tax release from Puerto Rico (where my grandfather lived), and they will dispurse the inheritance. Without being gaudy or bragging, my share will allow Sam and me to live comfortably for as long as the process takes to get ssdi, ssi and ltd settled. What a relief! I could actually be retired by as early as next month! From my fingers to God's ears!!

OK, this is getting even weirder. I suffer from dismorphic syndrome too. Though mine started at an early age because by the time we were 8 years old, we were being told "fat dancers don't get parts" and having weigh-ins. I've been through anorexia and bulimia as a teen ager. Weight gain has been something I struggled with before my stroke and is something that puts me into absolute panic attacks now. I sooooooo know what you are feeling. Is there a therapist in your insurance network that you can see for this? Maybe start with one for general anxiety that is in network, then go to this other doctor after the law suit is settled? At this point, I think some help is better than no help. I'm here for you!

Thank you, everyone, for the advice and caution. Sam, my mom & dad, Sam's mom & dad, my sister, the kids and I have all been talking about what retirement would mean for me. I don't expect to have the identy crisis because I always identified myself as an artist first, a DB admin second. With retirement, I will have plenty of time to put those artistic tools and talents to good use. I have new stained glass tools and glass just waiting for me. I also have canvases begging to be filled with color and movement, as well as all kinds of fabric, threads, yarns, etc. I think I have enough art projects to last me a while and I am really looking forward to the days when I can start a project and come back to it later, instead of getting hoim from work, the fitness center or a walk and being to tired to do anything. Sam is very happy that I have so much to create art out of because he says I am my happiest when I am eyeballs deep into the creative process. I'm starting to put together what retirement will mean for me and I am really starting to like the idea of not being a slave to a schedule any more.

SO, my disability application is in. We are waiting to hear that it has been rejected. My mother says we can count on it the first time through the process. Enter the disability lawyer for the second time through the process, and as many more times through until I am approved. What I have learned I can request is disability, suplimental income and, this is the interesting one, my husband to be paid by medicare/Medicade to be my 24X7 caregiver, since he is a lilcensed nurse. How weird, but it makes sense. He just has to keep his license up to date. Well, we can do that. So the world of social security disability is no longer looking quite so bad to me. I think I am actually starting to warm up to the idea, especially as things in the office become more stressful than I am inclined to deal with. I mentioned in the last blog that the office is starting to try to divest themselves of me. It will be a slow process, I can promise them that - as long as it takes me to have a "plan b" in place. Of course, once that plan is in place, then I have no problem helping them reach that little goal for themselves.

So, the time has come. Where bosses were understanding, they are losing that attitude. They are compleining about my accuracy, the time it takes me to complete tasks, the amount of time I am out vs in the office now. I can see what is happening. I still have short-term memory issues. I have language issues. I have mobility issues. I've been back in the office about 2 months. I'm not "getting better" as fast as they want me to. Well, stroke recovery is something that takes time, a lot of time. I've been working on filling out my disability claim. Maybe it is for the best. I can't work under pressure any more. I get headaches and I stop being able to process written language. For someone who spends much of their time coding or doing R&D, that is not good. I talked to my mother. She told me to expect to be denied disability the first time through. Everyone is as a matter of course. Once that happens, I have a disability lawyer who is just waiting to help get me approved the second time through. Maybe she and my sister are right. Maybe it is time to slow down, quit the "rat race" and take things easy. I'll bide my time here, basically getting paid to do not a whole lot of anything, for as long as I need to, then let it all go. I've already left a legacy here at the office. I've been part of getting a lot of things to happen for the employees, and there are several employees who have their positions because of employee referrals by me. If I leave, it won't be defeated. I will be able to leave on my terms.

My son dropped his cat off for us to babysit on Sunday. Since then, I hae spent my days locating th places where th "little darling" has been scent marking my home. Garion owes me for this. We have 5 cats of our own. Both of our males are neutered. The cat boxes are scooped daily and th litter is completely changed once a week. Our house does not typically smell of cat. Enter Tier. Not only has he been making my home his territory, but he has been driving his mother nuts, trying to get her interested in him. SHe is having none of it and has smacked him cross-eyed a few times aready. His older sister is anothe rstory. She happend to go into season th day after Tier was dropped off, and has been relegated to my bedroom until tomorrow morning, when Garin takes Tier to th vet for neutering. I can't wait until 7:30 tomorrow morning. He is a sweet cat, but he has brought utter chaos into my house these past few days. Th esnuggling only keeps us from turning him into dinner. He has also made me long for th days when Laney and Tom's cats are out of my house. Lanet says it won't be much longer. SHe needs to get ther rabies shots up to date and pay th deposits at their apartmet complex, then she can take them home. That will leave us with 3 cats, one of which is actually Logan's cat, but he is neutered, well mannered amd loving, so we don't mind keeping him a little while after Logan moves in with Laney and Tom. Right now, however, th bunch of them are driving me crazy!

Saturday evening we had another family dinner. This time to celebrate my father-in-law's birthday. I hadn't seen my mother and my sister in a little more than a month, though we have spoken over the phone several times. Their lives are just very busy. I guess I wasn't having a good day on Saturday. I was a little more off balanace than usual and, as is typical, I get a little "droopy" when I am tired. My right arm still gets very tired very quickly. Dinner was at 6:00 pm, and went until about 8. After dinner everyone went back to my in-laws' house for cake and presents. I was getting tired. We also spent time looking at the latest pictures of Sam's brand new neice. His twin lives in Wisconsin, so we don't get to see them often and the baby is only a few months old. My right arm was tired after passing pictures from one person to the next for 20 minutes. Then we had presents, followed by moving into the diningroom to have cake. I giess I wasn't navigating the step up from the family room into teh kitchen well, because suddenly my mother was on 1 side of me and my sister on the other. Ok, cake over, we stayed for about another 15 minutes, then I told Sam I was "orange," which is code for "turning into a pumpkin," that means it's time to go home. Said happy birthday to my father-in-law, bye to the rest of the family, and headed to the car. To get to the car, we had to walk across the front lawn. It's a lawn. It's uneven. I stumbled a little. My father-in-law grabbed one arm and Sam got the other and we walked the rest of the way to teh car. Once inside, blew kisses and we were on the way home, where I went straight to bed. Well, Sunday morning Garion calls with a favor to ask, which I agree to as long as he comes to help his sister Laney move a dinette set and entertainment center into her apartment. He isn't happy about it, but comes over and we head out to help Laney. Back at home a little while later (no, I didn't even try to life anything, I was just supervising), Sam comes home from Sunday patients, and we lay down to take a nap together. The phone rings. It's my sister. I can hear my mother in the background. They want to know why I am still walking with a cane instead of one of teh wheeletors. I tell them because I have to pay for it entirely out of pocket, it isn't cheap, I have other bills to pay, and hadn't gotten around to it. I'm informed that they are ordering one for me right now and what is my address for the shipping? You don't argue with Larra, my sister, or my mother, when they get themselves worked up into "take charge" mode, so I gave her my address. My mother gets on the phone and tells me "it's a really nice one, withthe seat5 and the basket, so you don't have to depend on people to hold as much for you and the front bar curves out so that if you sit on the seat, it isn't pushing your forward. Now, we bought this for you, and you need to use it." Then Larra gets back on the phone and procedes to tell me that they are worried about me. I looked terrible Saturday night, pale, droopy, almost as weak or worse than when I was released from hospital, and I have them worried. I hear my mother in the background asking if I have filled out disability papers yet. Before Larra can repeat the question, I inform them that I have not. They tell me I should. The faster I get them submitted, the faster I can get denied (everybody does the first time), and the faster April, Larra's friend, and a disability attorney, can get me approved. I start to argue when my mother gets back on the hpone and tells me not to worry, if I don't get enough from disability, I can work X number of hours a week and they will create a corporation for me and set me up with a work from home situation where Sam and I will be able to be comfortable, and I won't have to go into the office for 30 hours a week. They feel it is just too much for me. I promised to fill out my part of the paperwork today and to get Dr. Mike to fill out his part at my next appointment on the 22nd. They tell me that they love me and know this sucks, but it really is the best thing for me and that they are only being insistant because they want me to be ok and to be around for a lot longer (I think they are still worried I could die any day now). There jus isn't any arguing with them. I don't have the energy or, frankly, the arguements, so I tell them I understand (I really do), I love them and I will talk to them later, then we ring off. OK, the rollator will be here in 3-7 business days. I can't stop it and I know my mother will talk to Sam's parents, who see us often enough to know whether or not I am using it. So I'll have to use it. Fine, they get that one. I don't love it, but I know Dr. Mike will side withthem. He asked me about it at the last visit and I said I'd consider it. As far as disability goes, they are going to hound me until it is done. I know that. There is just plain no getting away from the "Dragon Lady" and the "pitbull" once they get an idea in their head and decide it is the best course of action. I'm going to have to do it if I want any peace and quiet. I am the one who has been wondering if, perhaps, I'm not trying to do more than I should. Maybe this is another instance of God letting me know that he is listening and what I should be doing for myself. Honestly, Larra and Mom don't but into my life a whole lot, unless they really feel strongly about something. It is obvious that they really feel strongly about this. Mom is willing to do whatever she needs to do so that we won't be financially hurting. She is a corporate lawyer. She does know what it will take. But, going with this, am I giving up? Am I giving injust because I do'nt feel strong enough, at this moment, to argue a different case? Or is understanding all of this and letting it happen just coming to terms with the situation and, maybe, really starting to accept life as it is now? I don't know. In some ways, it feels like a gigantic step backwards in my recovery. Was I taking gigantic steps forward, that, maybe, I couldn't maintain? I really have mixed felings about this.

When I was adancing, I used to get cortisone shots in my knees every other week. It worked on teh pain and swelling, made them go away. That was more than 20 years ago. I don't understand why they are calling it a "new" treatment, when sprots doctors have been doing it for athletes and dancers for decades. But, it works. I was feeling relief before I left the doctor's office after every injection. I hope you get as much relief out of it as I did!

I've been on the roller coaster this week. One day up, one day down. Sometimes up and down several times in the same day. Today, I'm in a down phase again. The last 15 years have a lot of fighting for everything. Fighting to get lupus under control, fighting for custody of my kids, fighting to get out of a wheelchair (from lupus, not the stroke), now fighting to get back to as "normal" a life as I can, post stroke, fighting to come to terms withthe fact that I will have other strokes in the future and I will develop vascular dementia, all I can do is try to prolong it. Today I am tired of fighting and wondering what the worth of trying to "get back to normal" really is. I'm really starting to think I tried to go back to work too soon and it is affecting my overall recovery. It hasn't even been 90 days since my stroke. In hospital, I worked hard to make myself walk and talk, use my right hand, remember the words for things, and pass every possible evaluation they could throw at me with more than flying colors, scared that they'd make me stay in hospital longer, or go to a rehab facility. All I wanted was to go home and be with my kids and Sam. Once I was at home, I did everything in my power to be able to show the doctors that I could handle going back to work part time. After I went back to work, I did everything in my power to prove that I could increase the time I spent in hte office until I hit at least 30 hours. That would garantee that they couldn't drop my insurance benefits, and though it would be tight, we could make the bills. Now I seem to have plateaued. I just don't seem to be making any more progress and, frankly, it scares me a little. I can walk without the cane, but I am a serious fall risk. The gyroscope in my head goes all sorts of ways, taking the whole world with it, at any time, whether or not I am standing/sitting, active or resting. I can use my right hand, for short periods of time, but then it gets tired, hurts and gets clumbsy. Same with walking. I can't walk teh whole trip to the grocery store. My leg gets tired, burns and stops moving effectively. Some time around 8:00 pm, the right side of my face will get "droopy" and talking will become more difficult. I still don't have lables for a lot things, at any time of the day, though I know what they do, and Sam and Logan have decided that it may be time to put lables on everything, so that I know the right word to call it. Great, for as long as I am not tired and letters/numbers/symbols still have meaning. By 9:30 - 10:00 pm, I am no longer able to function and but myself to bed, week nights or week ends, and the closer I get to Friday, the more difficult it is to get up with teh alarm. Even in the office, after about 90 minutes of actively working on something, it is time to stop for a while, as I let the headache goaway and things start making sense to me again. My desk chair starts to hurt me right around the 3 hour sitting mark. Some days it is a reall struggle to force myself to go t othe fitness center or to take a walk with Sam. I just want to ignore doing it. After work, I just want to sleep. Dinners are getting put off until Sam or Logan decides that they will deal with it, and dishes tend to stack up longer than they should too. I'm just feeling to wiped out to face it. Sam and Logan are getting frustrated with me. They start to snap and I start to cry. They don't believe I'm that upset at first, and when they discover that I am, they feel like total heels. I end up locking myself in my room and sleeping the rest of the evening/afternoon/day, continuing the cycle. Dr. Mike has already doubled my zoloft. He doesn't want to change it again, or to put me on another medication at this time. I don't know what to do to make things better. I don't even know if I want to do anything. I just want the angel to wrap her arms and wings around me, like she did in hospital, let me sleep and keep me safe. Every time I go to sleep, I look for that, but she isn't there any more.

Kelly, I'm really starting to wonder if we aren't long lost siblings.

Have I mentioned, lately, tha Sam is the absolute most wonderful husband in the whole world? Well, he is. Yesterday was Ash Wednesday. Sam asked if I wanted to go to church services last evening, then he made the "executive decision" that we would play it by how I felt after work. Well, I decided that I did want to go, so Sam rushed home in terrible traffic, changed out of scrubs into a grey shirt and matching slacks (when he wears something more than just jeans and a t-shirt, he looks amazing!), and off we wnt to church. The close-in lot was full as we arrived very close to the start of services, so Sam dropped me near the door and then parked the car. I waited for him and we went into the santuary together. There was a small crowd, maybe 20-30 people. Sam squeezed my hand reassuringly as we made our way to our typical seats, near the front, 3 rows back on teh right side. Both of Sam's parents are in the chior and smiled at us when we took our seats. Service was solem, and all about true introspection and true repentance, typical for the start of Lent. Then there was the "passing of God's peace," the part where we all stand up and move through the church exchanging handshakes, hugs, and the peace and blessing of the Lord. I remained in my seat. Sam stood, but didn't leave the pew. He was, I realized, effectively "playing blocker" for me, making it difficult for anyone to get close enough to hug me, while still being polite. If anyone questioned anything, he politely told them I was just tired. So, handshakes and handclasps only for me during the peace, something I could handle better than all the hugging and moving in close quarters. As everyone settled back into their seats, he huged me and asked if that was better. I smiled, said that was better and squeezed his hand. Service continued, the administering of the ashes, communion, absolution of the pentitant, finally the dismissal. Sam, who was seated on my left, toward the aisle, waited until everyone else had passed us before stepping out, then letting me out. We were very nearly the last people to leave the sanctuary, save the priest and Sam's parents who had all waited for us. It was third degree time. Sam explained that all the physical contact from hugging and being in crowds was a little too much for me still, plus my balance is still not great, so I can fall easily, and that by the evening time, I'm tired, which makes it worse. Ok, then my mother-in-law decided that she would stay with me on Sunday morning services, from when the chior comes down into the congregation for the sermon, through the passing of God's peace, and then go back to the chior, that way I have her to "play blocker" on Sunday mornings. Rev. E said that I can always stay seated and she can bring communion to me, instead of me walking up to the rail, if that is easier for me. I thanked them and told them I would play walking up to the rail for communion by ear. Back home again amd Sam told me to go ahead and get comfortable in bed. He'd make dinner and bring it to me. My energy had kind of faded during the church service and I looked "droopy" as he put it. Sounded good to me, so I did what I was told. Sam made soup and grilled cheese sandwiches. Logan helped and all 3 of ate them on the bed in my room. To be honest, I kind of liked that. Just me, sam and my "Little man," the knickname I gave Logan, the youngest of the 3 kids, when he was small. After dinner, I went ahead and went to sleep. Then the storms rolled in. At about 4 this morning, the cats started throwing themselves against the bedroom door, waking me up. They were so insistant that I thought hthey would hurt themselves, so I got up and let them in.....all 5! Now, Nikki, our tuxedo cat, does not like Oni, our big long haired cat, or Vivi, the youngest cat whgo is currently in heat and pestering him (Nikki and Oni, the 2 males are fixed). Cally is the "old lady" of the group at 13 years old, and typically does not leave her comfy spot on the couch. However, NONE of the cats likes thunder. With thunderstorms rolling in, lightning flashing and thunder rolling for more than a minute at a time, all 5 cats had decided that they could call a truce long enough to be let into the bedroom and hide in bed with "mommy and daddy." All 5 of htem were on the bed and tucking themselves inbetween and on top of Sam and me, once I got back into bed, to ride out the thunder. Now, we have a queen sized bed. But 5 cats, Sam and me all in it at one time is still a few more bodies than there is comfortable room for. Sam woke up fussing about being pushed to the edge of the bed. When he was actually awake, I told him the cats had swarmed us because of the thunder. He looked around at all of them, said "oh my god, all 5!" and layed back down. He went back to sleep, snoring. I laid there with cats all over the bed, awake until the alarm went off. The weather is still rainy and more thunder is expected, so we left the bed unmade, left my pajamas on the bed, and left the bedroom door open for the cats when we left the house for work this morning. I expect the cats will continue their truce and hide in our bed, at least until the storms pass.

Yes, this is scary. I know how you feel. I left an abusive husband, went back to school and worked full time, from being a stay-at-home mom. A lot of the time, I think Garion (my oldest) got the short end of that deal too. I also look at friends who lived their lives differently and think that if I had lived my life the way they did, I'd be "further along that road" too. BUt then I think I also might have had my stroke sooner, and I might not have the 3 kids that I do. OK, I'm not surrounded by the same material things that many of my friends are and I don't have money "to burn." BUT....I have Garion, Jalane (Laney) and Logan. Those are the greatest treasures in the world, and ones that cannot be taken away by a down-turned economy! I'm not good at letting them go either. The phone rings and I jump because 2 of my 3 are living out of the house now. They will always be your babies, asa mine will always be my babies.

I'm so glad you were able to make it here to Florida! I'm also glad you made it home before this front moved in so you didn't have to deal with the thunderstorms. My family deals with always being the ones who get stopped and checked every time we go somewhere too. I like to think of it as an "elite club of the most die-hard travelers!" Let's face it, we put up with all sorts of things and we still travel! Glad you had a good time!!

That feeling of being disconnected is still there. I don't think I am just tired any more. We went to the annual Shrove Tuesday Pancake Dinner at the church last night. Everyone was all smiles and "how are you doing?" Several people were asking me "are you all right? You don't look good." Sam passed it off as my being tired. Thanks Sam, because I just didn't want to deal with it. I also didn't really want to deal with the constant hugs from people, but I didn't say anything. Sam's parents and Sam could tell I wasn't comfortable, but I haven't told my family about the whole not wanting to be touched thing. When we got home, Sam suggested I call it a night and get into bed. I was tired so I decided that he had a good idea. I couldn't sleep and ended up coming back out to the living room a while later. Sam asked what was wrong. I opened up and told him that half the time I miss church on Sundays is because I just can't stand the thought of all those people touching me during the passing of the peace. It's overwhelming. He asked me to explain, so I told him that I don't want anyone, outside of him and the kids to touch me, unless I initiate it, not even my parents or his parents. Sam was a little surprised. No, he was a lot surprised. That isn't like me. He asked me if there was a reason and I told him that I just feel overwhelmed by physical contact. It is more than I want to respond to or deal with, except from him and the kids. It sort of feels like being smothered or drowning a little. I can't get away from it and it is just too much, too overpowering, too close, I don't know how to better explain it. Sam said he thinks this is a reaction to the higher dose of zoloft. I told him I would think he were right, if it hadn't been going on before I started the higher dose and I was just being quiet about it. Then he told me he thought I was withdrawing from everyone because I'm living too much in the stroke. What? I'm focusing too much on the fact that I had a stroke and letting fear take over. I told him that, yes, there were some things that still have me rattled from teh stroke, but that is normal. It hasn't even been 90 days since it happened! But this goes deeper than that. I didn't want to be touched when I was in hospital. That's part of why I worked so hard to be able to walk without the physical therapists. I didn't want anyone to touch me then, not even him. At least I don't still want to avoid physical contact from him or the kids any more. Sam told me to ask Dr. Mike about it on the next visit. In the mean time, since I don't know how to tell family and friends that I don't want them to hug me, or any other uninitiated physical contact, without being confrontational about it, Sam said he will try to explain it to them, diplomatically. I appreciate that about him. Even before the stroke, tact and I were not often aquainted. Since the stroke, we don't know each oter at all, though I am trying to become reaquainted with tact. I don't know if this is normal behavior or if I am being weird.

We live in FLorida. I have a 17-year-old-son at home, the last of 3 kids. I can tell you that finding a job at that age does not happen here. Businesses don't want employees younger than 18, and now they can't even get their own health insurance until they are 19. My oldest son lives with his father, but still comes to me for financial help some times, at age 21. I give it to him, every time I am able. Sam (his step-father) fusses sometimes. I tell him that I made my son. He is my blood and I will always help him out in whatever way my son needs, as long as I am at able to do so. When we conceived our kids, they didn't ask us to be born. That was our choice, so taking care of them doesn't end because they hit a certain age, or moved to a different place. They are still ours.

Last night was unusual even for newme. I had a good day at the office. Wasn't over tired, wasn't stressed about anything, except what to do for dinner. I had, yet again, fogotten to thaw anything. That has been a problem for me since the stroke. Anyhow, Logan said "scrounge night" was fine with him, others may call it leftover night. We each fend for ourselves from what is in the kitchen. Sam said that was fine with him too. Ok, problem averted. So, trying to be a helpful and loving husband, Sam asked if there was anything I wanted for dinner. I told him no. I wasn't hungry. He waited about an hour and asked me again. Then he suggested making pulled bbq chicken subs out of the bbq I had slow-cooked on Saturday. I told him I just wanted a cold cheese sandwhich on a sub roll, no condiments, just cheese and bread. He didn't look happy, but he brought it to me. Later on I announced to Sam that "I don't feel right." He asked what was wrong and I told him that nothing was wrong, but I was having trouble wrapping my head around anything. Everything seemed to have a sort of not-actually-real quality about it. Sam called it being disconnected, and told me it was ok, I was fine, maybe a little tired and suggested I go ahead and go to be early, or at least get into bed and lounge around until I fell asleep. I couldn't think of anything better to do, so I went into the bedroom, got into comfy pajamas and got into bed. I decided to watch some tv, but I needed Sam's help. I couldn't read. I could see clearly, but nothing had any meaning to me. Sam went through the guide on the cable box, reading show titles until I made a choice, then tuned to that show for me, told me not to worry, I was fine, kicked the cats out of the bedroom, kissed me and went back to the livingroom, giving me some space and time to myself. I half paid attention to what was on until I drifted off to sleep. I don't know what time I finally went out. Today, I don't really feel any better connected. Life sort of has that "going on without you" feeling, and I just do'nt feel like doing a whole lot of anything. I'm at the office, but glad that all of my tasks are done for the week and my boss is on vacation. I have no motivation. I don't really want to talk to anyone, read anything, leave my desk, or anything else. I just want to get through till 4 and go home. At least I remembered to set something to thawing for dinner tonight.

Tuesday is Shrove Tuesday and the pancake dinner at the church. Wednesday is Ash Wednesday and the start of Lent. What am I going t ogive up this year? Typically I give up hazelnut chocolate, or my weekly trip to Starbucks. I mean, what real "vices" do I have? I gave up smoking a looooooooooooong time ago and since the stroke and new meds, I've decided that drinking isn't a good idea. Sam and I are faithful to eachother. I don't use too many "four-letter words," spend unnecessarily, go out often, none of teh typical things people choose not t odo for 40 days and nights. My weekly trip to Starbucks, hazelnut chocolate and teh 20 oz soda I drink once a day while in the office are about it. I guess I could give up the soda while in the office. That would work. It's only Monday through Saturday. Sunday is considered "God's time," anyway, which means we get a free day every week to "cheat." If you count the Sundays in when calculating Lent, you come up with too many days. That's why we don't count them. I've never done much "cheating," even on Sundays, in the past. I can do this. Though, part of me is a little unsure. It just seems to me that, right now, I seem to cling to the things that were "normal" in life pre-stroke pretty hard. Where I used to roll withthe punches pretty easily, I now hate the very idea of change. I wonder if this will upset me too.... Even on the higher dose of zoloft, I'm still crying whenever anything feels llike it is a change in life, not to mention having my "feelings hurt" more easily than a small child. When will this settle down? Who knows. But back to Lent/Easter. I don't know if I feel up to running the Easter Egg hunt this year. I've been on a "medical sabatical" from being "Director of Christian Education" for the church since I had my stroke. I've said I may be back in late March or early April, maybe. It just seems like too much to deal with. Oh, I don't know that I would mind doing my "1 Sunday a month" in the Sunday School teacher's rotation, but running the whole show, heading up the planning for the community service activities, youth Sunday services, passion play, youth recognition sunday and all of that, it just feels like too much. I'm exhausted and dizzy just thinking about it! Not to mention planning vacation Bible school of the summer. Forget that! I just don't have it in me. I really don't. Even thinking about it feels like hitting a brick wall. I just don't think I can handle it. Just like I can'tn handle duties as Eucharistic Minister right now. I can't walk without my cane and it is a little hard to administer the chalice with only 1 hand. Not to mention carry teh Gospel into the congregation. It takes 2 hands and I only have 1. Plus, the gyroscope in my head is very touchy. 1 tiny little wrong move and the whole world is set to spinning. I'm trying to still participate as a ley reader, though. I think, right now, that has to be good enough. I've put off seminary studies too, at least for now. Wow. Looking back at everything I did up to the stroke, even I'm not sure when I slept. 40 hours a week at the office + 30 hours to the Sunday School + 10 hours to the parish + 25 hours studying. Um, that's 105 hours in a week of total 168 hours. No wonder I was so tightly wound!!! More than half of the total time was taken up by the office or the church. There's still family, chores, sleep and, if possible, time for Sam and time for myself. Yes, some things weren't getting the attention they deserved. I'm starting to think that having the stroke was God's way of saying "slow down!" So what am I giving up for Lent this year? How about the adrenaline and stress that used to almost completely consume my life?