SassyBetsy

Your mind is as sharp and clear in writing and so that part of your self is still here just fine. I have heard that antidepressants are a coin toss and can make you feel worse before you get relief so that scared me off. I don't know if this is accurate and I think for some it has saved their lives. I am so high on the pain killers and the gabapentin and the blood pressure meds and all the stuff so I can't imagine another drug in the mix. I am already in a half coma and altered state here lOl but I am still saddened by the loss of everything I have lost here. Give me that back instead of a pill to make me not mind so much. To me, both are unrealistic. For me the obsession is physical pain relief though which trumps emotional right now. I know what you mean by the spinning vertigo world. I never knew such a place existed. My neuro took me off plavix when he learned I took baby aspirin and told me that there was a risk of internal bleeding when both are taken. My pcp scoffed at this but I listened to the neuro figuring he rani into it more often. I hope all will be well now you are off of it. I feel quite certain that you will be sharp and clear for more time to come.

All that talk about a big family sounds so wonderful and you are so lucky. Will you adopt me?LOL! I know family stuff can be rough but it sounds like they are providing you with support and good advice. It is so nice to hear that retirement is less stressful which is healthy and wise. Enjoy.

Welcome to so cal! I hope the days are sunny and warm for you. Sunset dinners are the bomb and I hope you find some rest on this vacation time. Spontaneous things can sometimes offset those high expectations of planned plans if that makes sense.so I hope for balance for you. Anyway enjoy the healing salt water and I hope you make memories and find some rest too.

You are absolutely right that it is a constant battle and when one happiness moment ends then there comes another challenge or bad dream to vaporize the goodness and contentedness. The nights are the battle ground for me too CagedBird. The time out with others is so happy and then it ends and I am alone and miserable. Then the frustrations and disappointments and time to think or regret. The worries of course and who in their right minds going through all of this wouldn't be full of anxiety about things and the future. I give it to God and then I have to grab it back when it isn't fixed immediately so I can fuss a while again. I often wonder what I am doing wrong and I fail to look at the situation around me that is out of control here in my life and I don't know what to do about it but wait and let it sort out while I do what I can do which is not much these days. I too don't want any more pills or any more cheery cliches to just emphasize the emptiness that haunts my soul when I am in oh-yeah-that-mood. it is so hard to continue to life one boot out of the mud and then the other ones gets stuck. no wonder I want to just stop moving a little while because it seems pointless but I don't want to be in mud either so it just feels awful. And sometimes I want to sit here a little while and just feel muddy. What is wrong with being muddy a while anyway. The scariest thoughts come at night for some reason and I feel that awful feeling that I am being weighed down by the negativity and it is exhausting to fight that dragon every night. I just found a way to deal with it by journaling all those thoughts and feelings and I just want to let those feelings sit there and not fight them and not give in to them and just let them sit there on paper. Then I close the book and leave those words there to think about tomorrow. Then I sleep. My journal is my dream catcher that has all the words that are floating in my head that are parts of feelings some unnamed and unknown even but they are just feelings and the bad ones don't stay around any longer than the good ones do. I notice that the happy feelings fade and then the bad seeps in and then there is happy again as the days change or even the hours change. There is always something around me to bring sadness yet there is always something around to make me feel content or smile. My feelings are changing so much and since the stroke there is even an intensity to them that I never had before. Feelings can be like something I can touch now or this pain in my chest that closes around me. Even beauty can be painful like if I imagine a nice memory that chokes me up well all these physical expressions in words are exactly what I feel. It is not easy to get by sometimes and I like how honest you are and so keenly in touch with yourself. There is your strength. I like how you are not afraid to say how it really is sometimes. I too have moments like that where I do not want to sugar coat how awful the reality can be. I am so glad to read another post that is like the thoughts I have and I don't feel so bad for not always being cheery perky. I am often in some dark corner being afraid of this new dark. It helps me to look around while I am there and not be so terrified of the shadows in there. But sometimes enough is enough and I go watch some nice movie until I am exhausted. I like to read and if my eyes cooperate then I do that. I too like tea or some decaf and some snack. One of my problems too is waking up with bad dreams. I linger there after waking and the pain is harsh inside and I feel so many things related to the dream. I will either have to get up and just get dressed to go out and put it behind in the distractions of life or I will grab my journal and just put it in there. Close the book then. Dreams are so vivid with me now. I often wake crying over someone in the past or something now and who takes a dream seriously when I talk about it. So writing helps me. My dream world is as busy as my waking one sometimes LOL. Whether I feel hopeful or not the times and feelings will change and there will be another good fun time that happens. Sometimes I just have to be patient and wait for the tide to turn and find a good new snack and movie to help distract me while it does. I give myself permission that I don't always have to feel cheery and hopeful and I don't feel ashamed for any way I feel and I think my dream feelings are as real as my waking ones. I also believe that my feelings will change and that sometimes I just have to do something else even just to distract me. I try and avoid that maze of what is the point because then I get hungry and it seems all roads lead to lunch time anyway for me. I am simple. Well I don't know if a word of this helps but at least you can see that I am way more weird here and going through similar things. I love your sensitive soul and I know that you are courageous to be facing all of these ghosts.

We went to a pumpkin patch where I had sat my infants surrounded by pumpkins and took a picture with a camera that used film and the kids don't even know what film is lol. And later wheelbarrow photos with them crammed in with pumpkins. We go every year and buy some food in the shop there like peanut brittle and apple butter that is to die for. forget my list of 10 allowed ingredients. And that smell of hay that I just love but doesn't love me and I suffer later for despite antihistamines but that country air this city gal loves. And so this year there I was in a wheelchair holding the pumpkins. I didn't want the photos and then I did. It is here this day and so document the story even if I want someone to edit this out for real. I don't ever carve my pumpkin because I like to just look at it as long as it lasts and I will add some feathers or a little winding sparkle cord around it to decorate it up so it can last and I put it on a festive tray as a center piece to look at. Then I like to carve other ones and put candles in and smell that pumpkin burning smell. Yummy. I used to roast the seeds. and then make hot cocoa. We always go out on halloween since we don't get kids around us so we go oiut and see them someplace and go to some party. We are keeping all traditions going which is nice to see the kids dragging me out of this house. Thank you. I even got out and walked my wheelchair a bit. I am now holding my son's arm and walking into restaurants! I am snail slow but who cares it is so good to be on my feet even if I can only really feel one of them. Then I walked into class the other night and I got smiles but they just treated me like I always walked on my son's arm into class and it was a sight they saw all the time nothing unusual. In fact the professor got down to business giving me a deadline so I was just me there doing me things as usual. But I was skipping in my heart! Oh how good to be standing. The only problem is that I get dizzy and lightheaded standing up and walking is better but it still happens. I am still not going to be dancing but in my heart I am every time I get out of that chair and take those steps even though they are not many. I am not using the walker either just my son's arm. I joked and said that next time we could go in someplace with a bunny hop line up and no one would guess I couldn't walk right lol! So we tried it already but just up the path to the door. the neighbors already know we are unusual. lol. I have this exercise list to turn into the PT so it has these leaning and balancing things and stuff like that. I can't take standing and they say it is circulation so I am getting more tests for cardio stuff. So on my birthday went to a casino and buffet. I didn't like the lights and noise and that was completely overwhelming to me. I shut my eyes as we passed through it to the buffet which was darker and quieter. Really nice. So I was wheeled up to the salad bar to get my food and sat in a real chair and I was in heaven. The they started bringing me plates with a little bit of this and that to taste. LOL they kept bringing me the plates until I had a bunch of them with little spoonfuls on them. I hate wasting any food so I was tasting and then passing them around for others to taste and it was all so wonderful. Diet forgotten and I felt just like a professional food taster getting a bite of this and then that. My son said he never saw so many plates before and neither did I. I didn't mind though because it was all really good food and I never sampled an entire buffet before LOL! The little dollups of food cracked me up. It looked funny to have all these little blobs of food to taste. They were taking small spoonfuls and asking for small portions and I took a picture of one plate with them. And then I cheated and had a bite of creme brulee and a few other forbidden creamy things along with a sugar free assorted. I certainly over did as one does in a buffet which I usually don't feel I eat my money's worth but this time I did feel like I did because I certainly sampled everything! One can do that at a buffet like that where they whisk away plates making room for more and no one is able to keep track and food plates are coming and going on the table. I had so much fun and while eating is always nice to do well this was especially fun and funny. I got a free $5 to gamble and I looked for the old timey slot looking thing and when I won $20 I cashed out. I figured I was a big winner too! I took the money and ran.LOL. I am not a gambler and prefer to throw my money away on things I can use or wear. And by the way I no longer stress about the whole blood sugar testing and insulin and the table because I refuse to do that in a nasty bathroom no matter how nice and shiny it is and so I just do it at the table as discretely as I can. I have the pens now so it isn't like pulling out a syringe like I used to so I say hey isn't everyone checking cell phones constantly so maybe no one will notice when I do a quick shot. I layer shirts so I have a lighter shirt under so it affords some modesty. I have learned to take the insulin when the food is at the table instead of doing it in the car before dinner because one slow delivery and I was feeling it so now I just do what is safest and do the insulin when the food is in sight. I had to ask them to bring an appetizer asap and they apologized for being slow yadayada but anyway I dont worry about offending others that way. We drove through beautiful mountains and went to a lake that was a perfect picture with reflecting pines. It was so pretty and peaceful. I can tolerate drives better now but winding roads are horrible. Me and the peppermint handkerchief made it there though. And it was worth it to sit there by the lake in the car. The smell of the pine trees and just the fresh air. And at the Indian reservation my daughter and I bought silver handcrafted rings with hearts on them. We were told that the Navajo tribe made them and there was a card that came with them with the name of the craftsman. My daughter bought a dream catcher (II already have one) in a mint green which matches her decor. It was such a peaceful time that renewed my spirit and even called out my spirit which was hiding itself and beginning to sour. I can't be in nature long without feeling the presence of God which is my higher power and religious orientation. So much better than church for me to go to the mountains and see the trees and how wonderful and beautiful the earth is and that all around us there is life even little squirrels and the birds we hear and take for granted. For me getting out and traveling to something other than a doctor appointment or to class was the best medicine ever. Soul medicine. I miss my days past of going to the lake on a speedboat and swimming for hours, then fishing and BBQ and then going into the lakehouse for a nice steamy shower (I am not a camping girl by any means). LOL I no longer am attached to the owner of that house but I do think on those happy memories there of being so close to nature. And to have control of my body to do all those things. In the following years I focused on my education and career and my kids were graduating and doing things so life went in another direction as it does. And now I feel that I am slowed down again and that in a way the opportunity to find peace is here again. I look at this silver ring and it is my talisman of reminding me of the peace of the mountains from whence it came. And my daughter who is my caregiver now and she has a different one but same feeling comes over me when I see hers and that peaceful memory of our day of such peace. It was such a nice weekend trip and so nice to be away from home which had been closing in on me. It is really hard to explain what my visual world is like and I just explain that sometimes it is a synesthesia thing going on with my physical sensations to visual patterns black and white square tiles on a floor or patterns on ceilings or that I am having my eyes jump around so things are blurring out and fuzzy and moving about as I am trying to walk. It is sometimes like swimming through seaweed. Ok so while in a bread shop I walked up to the counter to pay up and I was on my son's arm and the person at the register said "next in line" three times although there was only one line and I was walking up and it was as if saying that would make me move faster so I said "It is still me" good naturedlike with a peaceful smile because who isn't thrilled to death to get homemade bread even if it takes forever to pay for it. So we still giggle on this one and if you saw a movie where the actress says "it isn't me" with Kristin Wigg then you can see why this is hilarious to us or then again maybe had to be there. But it was another first steps moment for me and even if there wasn't someone with a finish line flag at the end there was some fresh bread instead which is better isn't it. So I had my son's arm instead of a walker this weekend which is an interesting thing that I always need to be touching something to let me know where I am in the world. I could physically walk without leaning on anything but I have the brain part that needs to figure out where I am. I don't understand that at all but it works to walk like that. I can't walk when I am not touching something and someone holds the belt. I joked and said that the best way for me is to do a bunnyhop line up to a destination which works because I touch the shoulder ahead of me and someone holds my gait belt. We have done this going to the path home where we can be oddballs at home lol. I don't know if we will do it out but if you see someone doing this then it is me. I am slowly walking now and it feels so liberating to be out of the chair but it is only for short periods because I get lightheaded so I do these exercises for it and hope to be able to stand more. It is freedom to stand straight. Life is at eye level standing straight. I have an unusual life experience with all of this going on and no one knows it just looking at me. Nystagmus stuff and blurry and weird sensations and the emotions are just as whacky with intense feelings of joy or sadness that feel physical in my chest like the heart thing is so true. More brain damage fall out they say but beauty is intensified and so is sad or scared or angry. some regulation probs getting it to chill sometimes. My world is interesting some times and other times difficult to navigate and sometimes overwhelming. I document these odd things which I then find out are typical but where is that stroke handbook that describes this new way of existence which is so strange so far no one suggests I read. It is like I just have this and they act like sure stroke leaves behind this and that strange sensation like my arm that is frozen not in movement but it feels like it was in a freezer over night. it feels like a frozen thing although I have never been frozen but this is what I describe it as and this is interesting in itself. Mostly the world tires me out and being out in public even for PT is an ordeal but a fun one. This takes energy to deal with.

Thank you for allowing us to peek into your world, a very interesting life journey filled with love and adventure and three children to be so proud of. what more in life can you ask for than siting on a porch and sipping good wine with good health. I am struck by the suddenness of stroke and how it robs. But you indeed remind all that the good news is that Dorothy is still here and maybe minus a working arm and in a chair but she is still here and she still smiles. I admire your love and loyalty and it isn't surprising that Dorothy has recovered so well with all the adoration and encouragement but more than that because your love is something magically deep I can feel seeping through the page even and I think of your children and how lucky they are to have flourished in a home so filled with love. This latest problem just another life glitch in such a home and in fact it sounds like it just fueled more love and the need to say what has always been there of course. I envy Dorothy so much to have found such a hero and I think that another vacation could be planned maybe and perhaps someplace to drive to and avoid planes and altitudes which creep me out anyway or perhaps a cruise or something to do again still time and still so much love and still so many places to go maybe not Italy but perhaps taking the grandkids to see something. Or maybe home is better than anywhere these days. It sounds like you rallied when needed and that you are getting strength from being needed and that Dorothy does a great job telling you that you are doing a great job and that she can depend on you in good faith. Wow and you cook good too. She is indeed lucky and no wonder she will never tell you when she can cook again lol. But most of all thank you for sharing her journey and how she was before and what happened next. It is so awful to be just suddenly struck by lightening and then you are not you from your smile to being able to move your own body. It is a violation like nothing imagined and rarely discussed in our world. Who ever talks about stroke beyond prevention? We are all around aren't we those of us recovering in one stage or another and I never noticed before. Dorothy is tremendously strong to have fought hard to get to where she is today. It sounds like this is another flawless successful journey as well.

Thank you all for your heartfelt responses and wise words. I guess I should have been more clear that I mean that people in my little world don't understand my daily life and problems even though some of them are living along side of them it is not the same knowing of course as those of you on this site or any health support site that people have walked this path before me. That makes it hard especially when they don't really understand why going down a hill in a car makes me feel ill and other such things that seem weirder than life and i get it that this is sometimes ridiculous to them. I get mixed messages of accept this and then work hard to change this. For me I never know what the things are that I cannot change until I work exhaustingly to change it and fail. I will do that with this too, work on changing until it just doesn't and how long will I work who knows. I haven't decided what is something that cannot be changed but I do know what I want to change so that is a good place to start. I fear being blocked and not advancing because I accept what this is. It is still fresh and maybe there is a chance but I won't look back and say what a waste of hope even if I just stay like this forever. Like I said before this may be the better days than what lies ahead which is always a chance and a scary thought. Thank you for understanding about the identity piece and what a complicated thing that is. And the freedom thing. And thank you for pointing out that a day can just be not so good. My friend said a wise thing to me and that is that I'm either going to get better or I am not and that this outcome has nothing to do with the recovery journey. I did not get it exactly until I read the above response about carving out something that makes sense now. I am not sure what I can keep and what I have to create right now because I am not sure what I have. still have.or can get. I can still carry a purse or a briefcase from a wheelchair and many do daily but I wonder about this "as the world spins" thing and what I can do with this but I am able to still go to classes so maybe I can keep some goals I have. Guess I don't mind the yoga outfits too much. And yes it is sometimes a thought that will I be alive long enough to get that order in the mail so in a way I had to beat that fear and just not think that I can't buy anything because I am going to die tomorrow. I watched my family members live like that and keep trimming things down. I guess if I examine this closely I am buying some new stuff as a statement that I am not going anywhere and if I do go it isn't like I am planning and living like I am. I really had not considered that piece but it fits. It is my birthday month too so I had some gift cards and some luncheons with shopping so it isn't unusual for me to shop this time of year and so in a sense I am doing a normal thing not changing things just because of this. I am also shopping for the holidays as usual because I am one that likes a lucky find and I save things for the holidays. Right now I have holiday goodies from Costco tucked away so I don't eat them lol. In a way it is risky to be planning ahead because this happened so suddenly and I have a sort of PTSD about it. I am determined to continue in my old life here and I am thankful to those who are helping me do it and perhaps I am silly to want to be understood when in the long run they are helping me despite not knowing. I am determined to live and live well last hurrah is a good way to live any day. My Physical Therapist told me to not compare myself with prestroke but look at where I was last week and what I can do this week. She said I must be able to see progress. I understand her completely and it certainly is a wise plan and frugal outlook. Only problem is that I am some kind of lofty grandiose thinker maybe this brain damage contributes but I am looking for more than cheering on 5 more pedals on the bike or what else am I even doing in therapy? I want some real accomplishment. Like now I can sit up on my couch when after stroke I fell over sitting in bed. Now that is progress. Stop clapping for silly stuff like yay more pedal pushes so what if it doesn't get me closer to balancing on a real bike so maybe it does but hey this is irritating for trivial stuff because it makes me feel that this is all I will cheer so please stop. I am not giving up hope but yes I have miserable days because I want so much more than I can do right now and if I didn't have that misery then I would stay in an watch netflix which would be so much easier than studying for this exam but I am crazy like that and want want want which tends to irritate some folks. I want to say I am happier being miserable toward ambition than being content toward dissatisfaction. Or something like that only I can't explain it. Sure I may lose this soon especially if this pain keeps kicking my but I hope that I can continue to be Irish and fight this thing to the death. And thanks all of you here for listening and understanding and for watching me stumble around without being too judging.

I can't believe how fast the summer went and it is cold again already. I feel like I missed the whole thing because I did with the pain and just all of this stuff dealing with. And I am tired of it and I can see how others are. The cheering squad is not as enthusiastic and all of us are in the unspoken bubble of don't say it yet but what if this is it and it isn't going be all better. Then the doc says oh sure recovery happens. Meanwhile I am not getting better and the pain goes on and time goes on and more time is needed maybe but it takes a toll this waiting game. And does it have to be filled with so many annoyances? No one knows what my daily life is like really anyway and they say things just to cheer me and things you just say you know. I got some nice samples from doc of these insulin pens I just love and he said he would give me samples when I run out so don't worry about insurance and see now that is the kind of kindness I am talking about and wow. I am spinning more than usual over that one. I love the pens with the teeeny needles that don't scare me. The cost of the meds is nonsense anyway but just getting anything approved to use is simply madness. Why does the insurance get a say in what they cover anyway when the doc prescribes it for a reason and there is always generic but what does insurance think it knows better than a doc what to do? NO one knows that I am calling the insurance all the time and the pharmacy and that my daily life is dealing with all these silly problems like getting the meds to control my painful existence. I am told to be patient by these people who don't know what it is like and they don't care because they have their own life's problems on their minds and lunch breaks is soon. NO one knows that I endure these people talking to me in such a condescending manner or in a scolding way or annoyed with hey it is you again and I already told you how it is. No one knows that I don't mean to cry but my stroke location makes it hard to stay calm cool and collected like I used to be and that I will think of some snappy remark I should have made later but for now all I can do is cry like some hysterical woman so I am viewed as unstable and in fact No one looks at how this situation is contributing to the thing like who has to be in pain and have their meds rejected by insurance constantly due to some dosage crud like the 3 capsules of gaba 3 times per day are 900 mg at a time max but I can choose to take less but that is rejected but then the other doc prescribes a 800mg tablet 3 times per day and that is approved. No one knows how hard it is to live in this illogical world now that invades my every day life. I used to have other things more interesting to talk about. Even I am boring myself. No one knows what it is like to try and go out in my life remnants and attempt to salvage what is there and worry about can I do this and for how long. I was never insecure to this point that is nearly debilitating. I am told just stop and rest now but I fear that if I do stop that I will never go back to a real life ever again. I want to keep at it and I want to succeed. No one knows how hard it is just to get there to school all the prep to do before I leave the house even and just to get showered is a major thing now. And I have to have help and that is a chore in itself. How to be asking without driving others nuts. How to deal with that I am not doing it myself so it isn't the way I want. That is what makes me keep trying to do things. I want to arrange things in the kitchen the way I want them so I bumble in there and stand up a while so I can fuss about. It is meaningless because it all gets messed up; again but just like when the kids cooked as teens remember that so it is nice at least i am home and not alone. No one knows what it is like to be complaining and then to suddenly be hit with the blessing of it all at the same time like this. these things I never thought about before and wish were not in mind now. I don't want to think about any of this stuff for a while. I want to go out for the weekend just anywhere and eat and be merry. Cant drink with all this meds going on so I skipped saying that word. But I know that I am not someone anyone wants to go out with now. i am all drugged up and delicate on the edge of how long until the next pain attack. And this is rare so no one gets what this pain is all about. And I get sleepy then or sick to my stomach and won't I just stop complaining. I am not complaining but just stating the current state I am in. Or I need something. I am so dang helpless to do so many things for myself and so of course I annoy others with my neediness. And what else do I have to talk about but I try to avoid this topic and with some I manage it. It is just my life all the time and I want to turn it off for a while. I don't want to be me this weekend. Is that a song? I just want to forget all of this and go someplace else rather than looking at my home. I am redecorating. I can't clean but I can order online. I want different. New. I want to do what I always wanted but was frugal or what busy? So a few changes here and there make me happy in my very small box of a world. Got a new red toaster delivered just because I wanted a red one and the black one still works. I gave it to goodwill. Big deal. But it makes me happy to have a red one in the morning with my coffee. I can stand just long enough to get toast. LOL. I got a keurig so I can get my own coffee in a cup when I want it. The water is already in it and I just push the button and don't have to pour anything because it is in the cup. Away I go, toast and coffee. No one knows what it is like to not be able to cook anymore after years of doing all the cooking in my kitchen. I wont be baking this holiday time and I am sick when I think of it. the kids will do it dont worry and it will be nice and maybe we can get take out or go out too and it doesn't matter about the cooking being gone anyway when I can't walk or stand long now and the real problem is this: I look like ok so in the chair I can do everything because I am not paralyzed or blind so just get on with it in a chair but that is not it and no one knows what is like this spinning and blurring world that distorts with every move of my head. Meds don't help the situation either. I fool myself maybe that no one notices. In class I nod off. I went to a conference and I was there taking notes and I would nod off and my head would jerk and my pen scribble off the page and I would wonder if everyone notices. No one knows that it is the meds and that I am still myself in here still thinking. I raised my hand and made my comments. I am determined to still be me but this stuff has to cooperate here and I have to choose between a nod off and pain and this is not fair but it is here and no one knows what this is like. I go shopping and to lunch and put on my new clothes which have to be pull on things preferably large comfy moveable because I am sitting in a chair and I need it comfortable. No tight seams anywhere. Has to be pull on easy no buttons, no iron no dry clean. I go out and it is fun and cheery but out in the stores the world is big and confusing looking not like before. NO one knows what it is like for me in that my favorite stores that I don't really even enjoy it now that it is so distorted and my old mall lunch days are changed forever.But I want to go home and when I am home I want to go out. People say get out and don't stay home and I go out and then they say you go out too much so stay home and get rest. I am no better at pleasing myself or others than I ever was before but now it seems even more confusing and irrelevant to anything as my view is changed to anything that is not painful is good and nothing else really matters. Where have all the people gone? No one knows what it is like to be a spectacle in public with someone arguing with me in a wheelchair about where I want to go next lol and that I can't just go leave get away, I got out last week to the mall and I saw a purse in the window and I liked it but didn't have time to stop and so away we went. So this week I was out a different mall and I saw purses in the store. I insisted on going in to buy it but we were there for other shopping and so there was a bit of a tiff about what to do with other people vs what I wanted to do. I don't get to go back later by myself or when it suits me to do things and I have to take advantage of when I am out. I also don't need or want anyone telling me how to spend my money or what to buy or not. I know it was change of plans and spontaneous but it was just for a minute to look or so anyway who cares. So my daughter said she wanted to look too so she wheeled me away despite the looks and grunts behind us and we emerged with two new purses for winter and had to deal with some attitude from those who went to the car but got through it. I miss my independence. online shopping isn't for me and I love to get out for real. fact is that we go to malls more than did before. I even got brave and pushed my wheelchair like a walker one day and i went a few steps. I noticed I had an audience and one woman was smiling at me or perhaps mirroring my own huge sneaky grin. So I have a brand new black purse which I refuse to just put a backpack on the wheelchair as therapist and everyone suggests. I have always carried a purse and usually big ones. It is part of me. I wouldn't be me the woman with the purse. And yes I have too many probably but I recycle through them non stays in the closet forever. Anyhow the one I bought was a cheap one that probably wont last as long as a designer bag anyway. But I felt good with it. Is retail therapy a shopping problem or is it a nice way to indulge that materialistic whim: I don't know the answers but I really enjoyed putting my stuff in this big purse and carrying it around when I went on the wheelchair bus. I hang on to it for dear life but it feels normal to have a purse in my lap. I needed that spontaneous whim and my daughter is a bit like me and saw a bag she wanted too and away we went like two banshees making trouble as usual with the menfolk. Or sometimes we are the ones clashing lol but not when it comes to the shopping, I never had time to do a mall when I was working and studying. I can't go and do like I did before. No one knows how it is in the stores even with looking at many things like that is making distortions and being wheeled around is like being in a funhouse where things look all weird. Even eating out the food my plate looks all weird. I am in some twilight zone. but please don't just leave me home. I am home more than I want to be. No one even calls. Calls start with oh I didn't want to disturb you ,,,, as if I am going to have a stroke while talking to them. The flowers have dried up; fallen apart and been thrown out and there isn't any more coming. I am just here and no one knows what it is like to be a thing unwanted attention and then to be forgotten. I am not happy with either situation so how is that for never being easy to please. People see me and are surprised I am still in the chair and then the looks on the faces that say this is all it will ever be and then smile to cover that thought and a cheerful "it takes time" thing. Malls are full of strangers so I like them. Anyway have purse will travel is my motto for this coming weekend and week. I have an exam I hope not to nod through and a day trip I will sleep mostly in the car I hope. I want to get out away from home but I will want to come home and that is how it is these days. I am grateful not to be a prisoner in my bed so I must go go go plus i must get use outta this purse.

I want to use a rolling walker but I was told this past week that it is too dangerous for me to use it in public yet and to keep using the chair. I am impatient to learn to walk again and my leg is unreliable. I hate this so much but wishing isn't going to change it. I will heed the advice to not get too ambitious and fall needlessly. It is tempting to not ask for help or to be overconfident. I still have vertigo despite the therapy, I am too disappointed for words right now and can't accept that my life will always be this way. I can't think about that now and just keep trying.

I love your name Caged Bird and I often feel so caged myself. I am a prisoner in my body that betrayed me with this stroke right when I was living along just fine. Now I can't drive so I am a prisoner relying on others and sometimes I just want to go Now but I have to plan it out. I need others to help me get around to walk or go and so I am not a patient person so this just kills me mentally. I still have things I want to do and how can I do them. Learning to live with disappointment is toughest thing for me and i don't think I can or even want to accept that there are limits to life but there are. I like your ambition and I relate to your frustration at finding the right support at the right time. It is hard to pray and be patient when things are not going the way I want and I don't want to look at this as a learning thing at all, I want to be free from all of this end of story. Is it foolishness maybe but when I was normal once upon a time I didn't think of all of this and why do I have to learn this when others don't and so it goes in my head. I get angry and that is exhausting and pointless so I stop and just withdraw too tired to fight anymore between boxing bells. Then a good night sleep and I am doing it all again to work hard and keep positive and then I go and get angry and frustrated again and so it continues. Guess it is important to have each cycle to fight and to rest. I struggle to find meaning with my life now that I have this to deal with and I want to keep the things I was doing before and keep my eyes open for new things too. Having something to look forward to is so important. I am glad to hear you are living in the moment and finding some peace and joy in the simple rest. I hope the unrest is also useful to you to find what is meaningful in your life and what blocks you from finding your way to it. it is a hard journey and it can be fearful to self examine our fears that hold us hostage. I am glad to hear that you are up out of bed and in another wakeful part of the house because that is hugely symbolic that you are in the midst of life and choosing life's paths. I think that all the little things count and it is the little things that can make me or break me. I seem to rally over big things. So congrats on the steps towards being unstuck!

Yes falling is a great fear of mine and it has happened to me quite a few times but not seriously. I am really wobbly and I use a wheelchair out in public but I have a walker for use at home. I insist on sitting in a booth at a restaurant and ungracefully get seated but hey I want to feel normal eating out. The dang chair is hard to sit in anyway. I am like the princess and the pea chick with feeling every seam I am sitting on after a while. But I cant walk around in the real world yet although I have ventured outside a few times. There is so many hazards like broken spots in cement in walkways. I am so easily tired. Then add the big feet swelling that is so painful to stand on so I am forced to live life sitting down. Not the way we are meant to be really but it can be done. Falls are a huge risk when at any moment I may get vertigo or dizzy or just weakness. I have lost my balance and leaned against something as I try and go steps in my house. I can walk which is frustrating I can't have any balance. I admire that you can stay out of the chair. I am most scared in the bathroom and put some cushions in front of the tub I don't use anyway since I have a shower chair. It looks weird in the bathroom but I don't want to lose teeth. Forget fatalities I just worry about teeth. I just take aspirin. I was on Plavix with the aspirin and neurologist said combo can cause fatal internal bleeding. PCP scoffed at this but I just take aspirin just in case. I am not a gambling girl. I don't know much about the blood thinners on the market, My PCP said there was a study done and that 81 mg of aspirin was not good enough and that I needed more. I chose to just stay on the little aspirin I have been on now and not get my stomach any more upset than it is and I don't want any bleeding issue. You are so right that some of this stuff is really stuff you have to be careful with and watch. I put things out of my path just in case I lose my balance and it has worked. I put some clothes baskets with pillows on them on the chairs I have so that I have something to lean into when I walk to my bed. It helps for making speedy trips to the loo. I have swayed using the walker and so this way I don't hit anything that will be dangerous. I don't fall to the floor like I did in the beginning when I could lean and not even be aware of it and I would go walk without someone holding my belt. so I guess I have made some improvement. Stairs is my huge fear. Lets all be safe.

Thanks Yvonne. Your peppermint table piece sounds wonderful and now I want to find one because wouldn't that be so nice especially with the holidays coming up.

Dear Blog, I went to PT twice per week now and it has been fun. I did the foot pedal and I went less than fifty steps so I don't think that is very good but I have swelling and pain in my leg so I guess I can't be surprised. I got this vestibular treatment which was to just roll me around to get the crystals to do something and I hope it works truly but it is hard for me to take it seriously because I do more rolling when I am asleep. NO disrespect intended but I am a skeptic here. I was sick to my stomach and dizzy afterwards so maybe I should be more of a believer LOL. I have both inner ear and brain problems so it is going to take a long time. I also saw my doc and he says I am going to recover because folks with this stroke do. Then he said but sometimes not. I don't think he is a very good fortune teller although his ties falsely advertise his abilities. Everyone is still encouraging at this point under a year and I do hope all this will make it so. I want to walk and drive again but it is discouraging that I am still having problems but now they are complicated with swelling. I have had them check my heart and so far there is nothing wrong there but the doc wants some blood work to check something. My guess and hope is medication is doing it and he just wants to rule it out. My swelling is making it hard to even stand up and it is increasing my pain. My feet could explode any minute. I had a situation with the insurance co and the gaba which can't just be stopped according to bottle. They needed a preauth on the refill so they did an emergency override and got me a weeks worth and then they still didn't get the preauth so the pharmacy gave me 3 days supply and then still not a preauth and I got 2 days supply. So all this time there is some prob with the dose that changed and the insurance case manager tells me that they will preauth for 600 mg 3 times per day but not 900 mg 3x per day. So the doc had prescribed 300 mg capsules and told me to take no more than 3 but I could take 1 or 2 depending on my drowsiness and pain. He said play with the dose and see if I prefer more at night or more in the morning but not to exceed 900 mg at one time and not more than 2700 max per day but start out low and see what works for me. So I did that until the preauth was needed for the refill. I wrote that correctly a PRE auth for a refill. There was not an preauth because the dose was just the 300 3x per day and that didn't help me enough at night and in the afternoons. So I was trying to get my rx and my insurance case person kept saying the doc could write it for less and it would go through easy while I kept saying the reason for the way the doc prescribed it and it was like talking Greek to a turtle and anyway the doc office and pharm and ins were all pointing fingers to another to fax this and do this and I was having a nervous because I was on brink of not having pain relief not to mention not taking it on time was a worry. So I go to PCP and tell him my problem with the gaba and neuro doc and he scoffs and says I'll electronically send in for an 800 mg tablet of gaba for 3x per day. Before I left the doc office I got notified it was ready at my pharmacy and insurance had covered it! Ok did the faeries work overtime or did one tablet of it make the difference over taking 3 capsules of a lower dose maybe? I asked the pharm and they didn't know why but we all just clapped when I went in and picked it up. Ok so why didn't the neuro or the case person at the insurance know that this would pass muster and the other one wouldn't and why didnt someone suggest it before? Ok so now my PCP just earned a whole lot of trust from me and he is my hero for now anyway. I can cut the tablets in half if I don't want the full 800 and they are scored and I have a pill cutter. It isn't the best but hey it got covered and I have an entire month supply too. Oh and the insurance person told me that my neuro said that he changed his mind and wanted me to do the lesser dose and that I could go to pain management if it didn't work for me. I called out this insurance person saying that was no where near the conversation I had with the neuro and it sounded just like what the insurance had been saying but why they want me to go to pain management is nice but why when the docs both told me that pain management at this point is the pills I am on and they are working. I worried maybe the dose was higher than normal so that was the problem but then they went through at only 300 mg less per day. Oh and I wrote notes during the visit with the neuro and wrote his directions and medication instructions down so everytime they kept saying maybe I misunderstood, Oh and I am so tied of being treated like I lost my mind rather than my balance, then I said I wrote notes and had another person in the room. And they kept telling me to be patient because preauths take time. Weeks apparently. But then suddenly it was over all fixed just like that thank heaven, why does it need to be such a farce to begin with. So maybe I will have some peace and quiet and can focus on the therapy for the next few weeks. I may have all my meds authorized for now. PT room makes me sick. The room is huge and busy and I feel weird in it. She brought me some peppermint oil to smell and said it stops the nausea. Well it smells wonderful and it worked for some reason whatever. I get it every session. I need to buy some soon for at home. I don't know too much about essential oils but this works for me. Makes me think of peppermint candy. Wonder why it works LOL maybe distracts me but PT said it works and there is evidence and maybe so but I am a skeptic looking at placebo effect. Wonder if some other nice smell would work like some perfume and not even a essential oil. I am ever the skeptic lol. But the PT wants so much to help that I just accept it and enjoy it and wow it works so who am I to really care as long as it helps and it is not harmful. I really like pt very much and I enjoy seeing the others in there working hard and making progress. I am in a good hospital facility same as if I had been inpatient so it was worth the wait and finally I am here but I am a bit skeptical that I am getting oil and head shaking LOL when I wanted more scientific stuff and I guess I need to realize this is the scientific stuff silly me. Who knew. I need to take holistic healing more seriously. I am learning.

Hi Yvonne You are a sweet and caring person for getting up and out to do this for others despite your own challenges. I know how scary it is when you go out and meet others at first and that you wanted to not make any mistakes but you seem like someone who just pours out caring and can go with the flow. I am glad you left feeling wonderful and I bet you felt valuable and in the midst of life. I wish that I could be involved with this and you have lit a fire now that I think I will check out what is going on in my neck of the woods, Thank you for reminding me that the best way for me to take care of myself is to take care of others sometimes. I am impressed by your ambition too because it isn't easy getting through the day some times and there you were doing an important job. I hope that I can do some volunteer work too because it sounds like you had a great time. Thanks for doing that and sharing, Pam

Whew the nerve charging for any extras but then to send you to #8 REALLY! Oliver Sacks wrote a fantismo book called "A Leg To Stand On" and I love him anyway for all his books and my son met him at UCLA which is his alma mater, both my son's and his, anyway it was about his time in the hospital after falling and breaking a leg. I love this story because it is so real about how we become "patients" as an identity and how the system works to support this. I love his observations anyway and all of his books reveal an insight into not only how the brain works but how we are human. He is an example of a doctor interested in the whole person and their dignity as well as the illness or injury that they live with/suffer from. His books offer stories of his own childhood up bringing and that his parents were doctors and he used to blow up stuff with his basement chemistry lab, really amusing stories about how he became the curious neurologist. I read one of his books that was a diary of when he went on a trip to see ferns because he is in some fern club thing and he took notes on the bus and at the hotel as he was people watching and he drew the ferns he saw. I enjoyed the book because it was like being on the trip with him and I never noticed or thought about ferns much and that was interesting far more than I expected. I wish I had some ferns right now as we speak. In fact that was a todo list thing that has been on my list since I read the book way back when and I hadn't thought about it since right now. So yes there are some interesting and interested doctors out there but they may all be writing books or something because I imagine it is really difficult for the good hearted ones to deal with this new HMO world. Well we know that we all get a turn being sick but not everyone learns the lessons we hope they do from the experience. Not all experiences of bad things make people empathetic sometimes they get mean. I respect the hard work that doctors put into their training but I never respect the title alone. The person matters and that is what they bring into the room. There is a saying "No one cares how much you know until they know how much you care." AJ you are such a sweet person I can imagine the dr and nurse that wanted to help you out and isn't it so nice when kindness happens it just is healing in itself.

First of all thank you for posting this and warning us that there are snake oil peddlers in white lab coats that the body snatchers put in place of the real docs because please tell me that these people did not make it through med school. A cardiologist told me that doc have a lousy manner because they have their heads in books for all those years and well I personally figured they had their heads somewhere else which I am too much of a lady to say outloud. As a woman I have dealt with some form of doc or med person for my whole life for myself or my kids, and not all pediatric folks are warm and fuzzy, and so now with the stroke stuff it is just more of the same and just because a doc has some smanchy degree doesn't make him or her intelligent, a good problem solver, or remotely interested in patients other than a boat payment. There are some dedicated ethical and inspiring docs out there and I wish I had better luck at finding them but the sad truth is that it isn't about self-blame here at all because we are first of all reliant on the insurance, the recommendations, the time frame, and other things that we trust in and assume in and all of that. I think we should question everything and everyone all of the time but there are times when we do and we don't have time to do a complete survey because we need help and we need it now. It is the job of the good ol' boys club of docs to regulate and eliminate the ones doing harm and it sounds wonderful to have some sons to threaten er I mean suggest they do what they should and maybe we can borrow them just to say now I know a woman and her sons are lawyers no harm in that eh anyway we are sick for heavens sake and have to watch out for the sharks at all times even now or maybe especially now. This makes me so angry reading about the variety of nutballs making so much money for Swiss vacations that are incompetent and uncaring. On the other hand it also sounds like some SNL skit of idiots doesn't it? Not to make light of the situation here my apologies just my quirky dark sense of humor. Every one of these docs has some SNL character in mind here so I couldn't help myself. That and the muppets my mind puts people in muppet categories when they are extremely idiotic. Cant you just see No 7 as monster with some fuzzy hair shaking it abuoot thinking he is all that and all he is spouting off is some blahs. It is really disheartening that they get away with low standards. As you might imagine I am a complainer and complimenter with those satisfaction surveys and hope someone reads them. I have seen some badones come and go so sometimes they work. Many people don't like to complain but I figure it may help the next guy. oh that sounds nice I am also a complainer to be honest and I am going to have my word in fact at this post stroke stage I am nearly filterless. I just am angry that it isn't easy to be cared for correctly even when you do all you can to ensure it and hope for it. There are licensing boards to contact but when an insurance co or PCP sends you off who thinks to check and wow I now look on YELP because I went to a rude one and then looked him up and he was king of rude on there. But otherwise we are often caught off guard because we are vulnerable but this is a good reminder to be empowered and not tolerate bad professional behavior. Having said that do you know how hard and what a hassle it is to change doctors LOL! Don't get me started on my own list of docs here and I am not just talking about the ones I have met during the stroke days, we can get a good list going here lol and I am so sorry that it seems that at the higher level of docs the story is the same. When I was in the hospital I eagerly looked forward to the visit with the neurologist and when he came all he said was he ordered some headache medicine for me. I said I don't have a headache and I had other questions and he kept repeating he ordered headache medicine for me. This is a true event and I say that because it is unbelievable and sounds like it is made up. Or maybe he didn't speak English. I had to wait over four months to see my current neurologist (#2) and he took over an hour to sit and talk with me, which was also an evaluation, and he didn't even have my medical records so it was just a history and all that. I told him my PCP wanted vestibular and cognitive testing which he said what I felt he said what are you going to do with the findings? I agreed and said that I already know I cant balance, walk or drive and so I just want to get on the therapy and not waste more time on tests and as for cog well life is the best test there is because the subtle stuff isn't going to show up on a simple test and will show up in the complexities of life and most folks want a test though. I asked him if I seemed fine and worried that maybe I was crazy and didn't know it type of thing and he said in the hour I did not have any unusual cognitive slips and said his test was who is the current president and what is the date and when I didn't know the date I said that was not unusual since I never know what day it is even before the stroke LOL because they all ran together. Now they do in a different way. So all my blabbering is that I read your post and think yep more unnecessary silliness going on in the middle of someone's real life and I wish you could sue over your damaged ear thing and I find it unforgivable that the stupid doc alarmed your wife and then had the nerve to say that he wasn't going to be available later. Ok so did that sound like some secret agent message that was going to self destruct in five seconds after hearing it or could the doc have managed to somehow take your call at a later time and by the way did he even follow up with making sure you did go for some emergency evaluation for the dangerous situation he claimed to have caught just in time or was he going to the moon. Ok so I don't get on with absolute stupidity well. And right now I am filterless. I am not writing my collection of four letter vocabulary but I am thinking them. Anyway I gather from all of this new world of stroke stuff that no one can predict for sure and that since there is just a hope and a no hope condition then we probably are all better off choosing the hope condition and maybe it may help if nothing else does. Maybe the small gains could mean more than they do to me and perhaps it is all about perspective. I am not a great fan of the serenity prayer because it has never given me any serenity with having to accept things I don't want to and to go do things I don't want to and I don't see how that is going to bring serenity to me but I am told that if I master this peace to stop fighting life I will be more comfortable. at this I am laughing because I am held hostage with no control in this and there is so little the medical community can do for me and I have to trust God that this is how he has the plan going and so can u imagine my conversations with him lately. yeah I can't hear people talk about the stages of grief either since i can recite them in my sleep and knowing doesn't change feeling. This is hard stuff. But what I find here and other places where stroke folk gather is a sharing of stories that add up to so much help and understanding that I think no therapist can offer in one place so thank all of you for stories and feelings shared. I don't even know what the point of my reply was going to be but here it is. .

I dream at night of being myself and walking and then lots of the unresolved stuff with people no longer in my life and other such ugliness so sometimes I wake crying oh now wait then add that the pain killers wear off because I don't have sense enough to set an alarm to wake up to take them-thinking if I am sleeping then who needs em but anyway I don't wake up in a very good mood. As for setting any kinds of goals I don't know what my options are yet and what I will be able to do or not do but right now everything is really hard and I am learning to be disabled which seems like just one limitation after another but it is a real talent to be able to live in the world with them. I guess if Anne Frank can speak to the goodness and beauty in people and the world then I guess who am I to complain because I am not living in a closet with people trying to kill me. Yet it is all relative because in my reality right now this is awfully intolerable at times and all the inspiration in the world doesn't stop any pain for me either physical or otherwise and there is a spiritual energy pain that seeps in my soul from exhaustion of trying to cope which leaves no room for any dreams in the arena of goals or such even looking around me and appreciating that life itself is a beauty to be admired. I need that pain relieved as much as my physical pain and maybe they go together. Well as Maslow would say first things first when it comes to what I need and where I need to go next. And right now I am thirsty and it will take me a long time to shuffle into the kitchen and grab a sippy cup but it will be worth it only if they put what I like in there otherwise I am going to quench my thirst but I won't enjoy it. I like the crystal light fruit punch. Anyway life it like that. I want to keep living but I want it to be what I like which come to think of it rarely happens. well AJ as I get to know you I can just imagine the look on your face taking offense at the very idea that a man of your age would dream so don't take offense when I am surprised that you doubt that you may find some meaning still in life somewhere that may be connected to some dream of the past in some little way. Just some food for thought but hey I think maybe you are getting that look on your face again. So it is time for me to make that long walk into the kitchen.

Thank you thank you thank you. Wise words and good advice especially the eat ice-cream part and I take that one only I do the sugar free pops. No my life has never been perfection and that is the real problem. LOL ok and it hasn't been peaceful either. The problem is that I correlate the two and they probably have so little to do with each other that I am wasting my time on either. I should be focusing on the ice cream and whatever else that is in the here and now and under my control such as doing. Yes doing is a good thing and especially when I choose the doings. Control is a brand new word to appreciate nowadays for me.

Dear AJ, we are all half the man we used to be at some point for even before I had the stroke I was surrounded by those half my age which isn't so flattering for us women anyway and now I would gladly take that half and now feel I am a fourth the man I used to be. Ok that is corney but it is just that we feel loss all along this journey of self-growth and finding the joy takes some doing. All I know is that you may be housebound now but thanks to the internet your words and spirit soar on wings and such limitlessness is experienced just through a shared understanding and that is the gift I received from you and all those who have kindly replied to my message in a blog. I am truly sorry if it caused you pain. I am sorry that it feels like it was a past belonging to someone else because it is experiences worth recalling and reclaiming. wow impressive. It is part of the tradeoff though that in return we find it hard to live up to the next step, hard to let go of the past and when we do we kinda hold on to things better left to soaring and eliminate all trace of things we would benefit from knowing.I am envious that you have the memories. I thought I would get more time and make more and then I feel selfish for saying so because I have had a good run too here but I am not ready to be finished though. Don't be sad because even from the chair in front of the internet you are a mighty force and I bet that when it is all tallied you are double the man you used to be. PS. Just did some work with at-risk teens or some internship work and stuff like that. easy stuff and I always found doing it in real life less stressful than doing a class presentation in front of peers even when they are supportive and nice. LOL.

Thank you Ron for holding up hope for me to grab onto. AJ I am so impressed with your life so far and I thank you for taking the time to encourage me. I would sing the national anthem if I could just hop in the car and drive to the stadium and walk up the podium. No that's a complete lie and I would take being shot at dawn over singing that. I am impressed you trained with Dr Carl Rogers because he is one of my idols.

Source: Vision problems

Dear Blog, I went to physical therapy today and the wheelchair van came to pick me up this time and it was a wake up call that hey what am I doing in this thing and not driving or simply a passenger who happens to have a wheelchair in the trunk. I have being a burden to anyone and I have intruded on the lives of others so much lately that I do know now who loves me and who doesn't. I like to hold onto a bit of mystery about how I spend my time so I like to call in to have a pick up once in a while. But since I can't travel alone or be alone at all anymore I am suffering something the opposite of loneliness that doesn't have a word for it but iti is total lack of independence and the feeling that I have no space yet I am vulnerable and dependent at the same time wanting some freedom. It isn't possible when I am so physically limited due to these new challenges. I can see on their faces they are drained and also discouraged that I am not making better progress. They too wonder how much longer and what to do if this lasts forever. The smiles are not so frequent and genuine. No one wants to say NO but then again it is easier to just be invisible. Where is so and so because I need a ride or I need need need. I am fed up with feeling like i need to apologize but then again I am the intruder as a person who actually takes up someone who says if there is anything I can do and how dare I do that, It isn't done in society. So there I was sitting in a transport van all cozy. I still don't have the door to door service because the pcp is mia when it comes to doing any referral or paperwork or just anything except waltz in the room and chat for 10 minutes interlaced with interruptions from the nurse regarding other patients who may actually be getting their needs met during my time perhaps but most likely when they are in a room some nurse is interrupting the doc with one of my needs. I wonder if much gets done there. This is my second pcp. I wonder if I need to keep kissing frogs. So I go to PT and she sits next to me and fills out the paperwork I need to get inhome help and community access through a little shuttle. She gave me the gift of some possible independence and at this point is as good as working on my body. My days are full of trying to fix pharmacy problems, (cmon a preauth for a refill really omg), and other insurance caused nightmares of referrals and preauths and having to referee fax fights of who sent this or that already while nothing I need gets done. I try to be a honeybee type not spouting vinegar but I am mostly so fed up and at my wits end and having some emotion regulation difficulties that I am crying yes even in public or over the phone. In my real life I would never cry because the prescription was not ready and I would know just what to say to get what I need. Now I find that I am a hotmess and all this time I was judging myself and then I noticed that hey it was getting better and I was making some snide remarks mixed in with some humor and making it clear what I need and what I would do if I didn't get it (threats to go to the emergency room resulted in a prescription being authorized within the hour) but then I realized that in my old real life I never dealt with such a broken down system that lacks compassion for anyone not the clients and not the employees. I weep for us all. ok not the ones not fixing the fax machines. well maybe I have worked with broken systems but this is a big mess on a daily basis and I am going to need a psych eval soon or a nice padded room. How is this helping stroke recovery? My blood pressure is higher now than when we started. My life is so much more stressful than it used to be. I want to be enjoying some rehab here folks. I only get once per week because they are full. I can't accept that they don't give me what I need because of taking care of what they need but I must no choice here. Ok so can I go someplace else HA that would take starting over with paperwork and I already made that mistake once and it isn't one you make twice. In this land you don't want to reset paperwork or authorizations. I want to sit around sipping tea and only think about butterflies and waterfalls and I have to constantly run interference and be my own advocate. And I am drugged up people. Then the people causing me grief ask if I have someone to help me so that they can spread the grief to another unsuspecting soul. I hate to brag but drugged or not I am not the type to choose peace over perfection and that is probably how I got in this mess to begin. All I know is that this is unacceptable to have so many problems related to getting what I need for my health and don't forget they told me I did this to myself to begin with so all I am trying to do is take care of my health here. I don't know how to choose peace over perfection. I want it done right and I want it done now. Some things need to be. On the other hand I need to walk away and let things go. These are not health things though. I need those meds and therapy so that I have to stick around for but for other things I can walk away from it. I have no time for arguing over anything and I have no strength. I am really of the opinion that if someone has some strong feelings then they can take it to the couch because I am not interested in rehashing things someone should have outgrown or discarded and there are people paid quite well for listening to that stuff. I have to let it go that sometimes the floor will need to be vacuumed and the dishwasher needs unloading and that my beloved plants are dying because others are trying to live their lives and pieces of mine and are dong the best they can. But don't use me as an excuse not to do what you need to be. I want to be able to sit and just enjoy doing nothing but I am not wired that way. Even when I can't walk across the room without help I am still not relaxing with doing nothing. LOL. The kids put up the Halloween lights indoors and out and some decorations. I have hello kitty halloween decorations. I am a big fan. I adore any kind of twinkling lights for any occasion and so I am all enjoying the lights. I sat silent and didn't say do this and do that well not very much. I am proud of them and how they carry on things now. I have to choose peace over perfection in all things. It is so against my grain to be sitting on the sidelines but maybe it just isn't my turn anymore. I have to do the things I still can do and not minimize their importance to myself. I am so self critical. My new motto is self compassion. This isn't how I imagined my year or my month here. I had a different plan and let me tell you I do not like it when my planner gets messed up but that is why that fancy eraser tape is so nice because in my world nothing goes as planned. I am always saying of course this or that is not happening the way I wanted, and I am flexible usually but not for this. I am really ticked off about it this time. This is not a rainy Hawaiian vacation here this is my real life taken away and a hoax of a life from the sidelines, from the couch or a wheelchair. I want a real life and i want to get what I had if not all then some and I want some future. In reality I am glad to be alive for this moment and ashamed I want so much yet angry that I have been robbed. My catholic upbringing to be guilty lol. But the lights are so beautiful and twinkly and I am happy to choose peace over perfection at the end of the day because sometimes it is exhausting to want more and other times it is impossible not to.

HI I think that there are no accidental conversations and that one should listen to one's instincts. You are worried and your dad is suffering and you want to know what to do and how to keep him safe always and how to help. Your dad wants to be strong for you, and I can hear this but he is mentioning some things consciously or unconsciously and he is in pain of course because of all the things you mentioned and some old things probably as well. It is really hard to watch loved ones suffer and to know how to help. We suffer along too and there is the one thing we can do is help ourselves through some measure or another perhaps talking to a professional or trusted person with experience with such things. Sometimes there is fear of being weak or somehow less than for admitting to suffering (I wouldn't know because I am a class A complainer) and sometimes we never had it modeled to us how to deal with suffering so it is really important to link up to someone who is very experienced or trained to manage suffering. Our brain problems cause alot of emotional things beyond our control in addition to life's woes when we have a stroke. I know that I am not the same and can feel this but I don't want others to really see it there but then again I am happy when they do and I don't have to pretend. It is really a foreign land to be this hurting and suffering especially since I never thought I would be the one in the needy position as I was the one comforting and taking care of. You will find your answers. Your dad trusts you, I can hear that. Best to you all.

Hi Your mom is lucky to have you and I hope you get some rest for yourself and some things done because she may be feeling better and want to do this and go here and make up for energy lost lol. I know you are worried but at least they are addressing the problem now. I hear that pacemakers make all the difference and I will think positive energy and prayers for you both. pam

HI Pearls Glad to hear that you are going to therapy and hanging in there. I know it can be really frustrating to not be back to normal. I wake up every day and say What! More of this? I am ready for it to be back to normal and why not because i never had more to deal with than a flu or a sprained this or that and it always went away and life went on. This is going to be just like that in my mind and when they talk of brain damage and all that it doesn't register but when it does on occasion then I sob my heart out and refuse to accept it but it looms over me like a dark cloud and I don't know how to have hope and acceptance at the same time except to just live moment by moment and enjoy the day especially lunch after therapy which is always fun for me to be out and about. We won't give up and so I am glad to hear that you are not happy with the way it is right now because I think for me if I got happy with it then I wouldn't fight so hard anymore. It hurts so much to want to be back to normal and it hurts so much to keep trying and not see immediate results but it would hurt more to not keep wanting and trying so I get what you are saying. What a place to be. It hurts to look back and say that is gone now and I want to be standing there looking back and saying wow I never thought I would get back here. I am no where near acceptance guess cuz I haven't realized exactly where I am standing at all. But as time passes I get discouraged and it hurts to accept that maybe I will never do this or that again. For me it is better to keep the denial or the fight or whatever this is that I cling to and just keep on going on. What happens when I don't get to go to therapy anymore and I am not at my goals? I hate to think but I will not despair today at all. I will enjoy the day as it is and do what I do and be in the middle of life not waiting for it to start or end or anything just live moment by moment. I am glad you will never give up and never give up hope. I am right there with ya. I had my future planned and mapped out before this happened and look how that turned out so I think I will just sit back and roll with it awhile and see how flexible I can be with but I guess because I am this diva who thinks I will eventually get my way. So we are never quitting this fight together~!