SassyBetsy

Ray was lucky to be so loved and if it had been the other way around I bet he would feel similar to the way you do. It is so lovely to hear such a love story but at the same time the pain it is bound to bring because he is not here is not so good but you sound like you have made friends with this pain and walk with it more gently. Trust yourself to venture into the world on your terms and at your pace. I don't understand when it is right to say that the grief is finished and why would it be when Ray still isn't here but in time it just fades to more tolerable and acceptable not replaceable or relivable but just something of an honorary remembrance of the heart which Ray will always occupy. When it is ok for you to go to any place you wish you will know it and I think it is fine if you want to go someplace you have never been before because I think you still share it with Ray even when you are with other people too. I hope you surround yourself with people who also share a loving heart like Ray and it sounds like you were with some wonderful couples.

Today I had a biopsy done and I was scared of a little numbing and scraping but these days the fear button is in the o.n. position. Plus going to another doctor and adding up all the not-so-wonderful experiences with doc offices from long inconsiderate waits (hey I need a lunch hour too over here forgotten in the waiting room) to being told by staff they are too busy to do something I need. I was getting sorta jaded with the whole system and situation really. It seems like no one is really seeing me as an individual person who has feelings and I am just a patient or a member number or a prescription number. The number thing really gets to me something awful. Is it really all that efficient to have me be a number rather than a name? And if it is then is it worth the cost. Yes there is a cost I believe and not just in that it irritates me (so many things do these days) because when I am a number I am not a person with a face anymore-I am just not a real person at all--I am just that vague shapeless patient-thing who has been falling through one crack after another Today I met a nurse who is a true healer and she healed my battered psyche and soul today with empathy and compassion. i hate to say that I have not found much compassion in the medical arena except from a rare few good souls. Maybe I have a sour worldview now since my horrendous experiences from suffering at the hands of incompetent unsympathetic people drawing blood, processing referrals, taking tests, processing, filling, nursing or treating me. it can be disheartening and I start thinking is it ME and how is this impacting patients who are constantly having to advocate for themselves to get anything done at all and are other people having to complain to get someone to do the job they are just supposed to do and that is needed?Do they really expect me to be sympathetic that they have a million patients and no one to help them do this or that (and yes this was mentioned to me once) or am I just a heartless diva for not caring a hoot about what they need and it is all about me? So back to today then already when a kind nurse called me back to the room and then she cheerfully listened and then shared her story with me about her own struggles which always makes someone more real and human and so then came the doc saying time for a biopsy with a numb up happening. I am diabetic so did I really start fussing inside about a needle, well yes I sure did. The nurse came in caring the needle and I felt the blood drain out of my face and I thought I would faint.But then she started singing. She was getting all set up and kept on singing and then she explained stuff and thanked me for compliments and then she just sang away while she numbed me up. She comforted and encouraged me so when the doc came in I was ready And she was there finishing it up and then she wheeled me out the doc office into the hallway to the elevator and into the elevator all the while telling me her name again and assuring me that everything comes by her desk so she will follow up with stuff for me and really she was so kind and I felt safe with her in a way I don't usually feel with professionals. I believed her. Maybe it was the way she talked to me like I was real and she was real, or maybe it was how she listened and at the same time challenged my fears, or maybe it was just her singing and how it acknowledged my fear and accepted it and wanted to calm it. And her presence influenced the doctor who can be rather dismissing in his busy world and even he was reassuring and forthright at the same time. When she leaned down to put on my shoe which had fallen off I thought of the bible story or foot washing and realized I had been given the gift of some TLC today from someone so wise and humble that I want to honor her and it won't be known in this life but it will for eternity although I did tell the doc he had a jewel and he said he knows it but I hope he does. I see how exhausting it can be to take care of someone and I have to say that I didn't mind she started to share the burdens she carries. In fact I felt honored she talked to me and shared. Did she know I could care and feel for her and be glad for a minute to think of something else besides my own pain and worries and griefs. She didn't expect me to be strong. Whhewwwww whatta relief cuz being superhuman is exhausting. That little humming and then some singing transported me into a church or a choir or some show in a theater and just a little daydreaming there too but it was as if she shouted from a theater into the dark that it was alright to be afraid and that the secret was safe with her and that it would be alright no matter what happened because the singing would go on and the love goes on because someone cares and someone heard me whisper I am lost in here and take care of me please but don't turn on the lights to expose me. Just a little TLC makes all the difference and it can heal some of those biggies being dragged around for years. I feel lighter today.

This story just makes me sob with the unfairness of it all, and for the great love you have for Bob and for his strength in holding onto life and to himself, his name, and for the journey of discovering what is the meaning of identity anyway and is it ultimately love that makes us real after all just like in the velveteen rabbit story. I am viewing how strong everyone is on here. I can't imagine watching a loved one going through this and being strong in the exhaustion and painfulness ot it all.I hope you have support and physical help too.I understand how you see Bob always and it is just the same as when I look at my adult kids and I see them as this total picture of some rapid collage of images from birth to now. They are so many thing that are rolled up into one thing that makes up them. Change doesn't diminish any of it. I would be so scared if was my loved ones instead of me.. In a way you are left alone to take care of everything and do be strong for eyeryone and yourself. I like all of you because you are strong loving loyal persons.

Thank you Sue and I can't say enough about Caregivers no matter what illness they are associated with but especially of stroke which is a really unique entity. Your connection to Ray, who sounds like a tremendous person, will continue to help others and that is a great gift you are offering on this website so thanks so much and I hope to get to know you better too. Maybe some of the guts will rub off on me.

I know just how Bob feels and you are such a great intertwined person for him. I too can stand and step a bit as long as someone holds the belt and I say to them that we are joined cuz we all go dowm probably especially on the dang stairs which terrify me. I always hated stairs anyway when I could walk I would go down slow and hold the railing. It is really hard to wobble out there in public when I get out of the car. Vanity I know but it is such a personal image loss to be so vulnerable and less than the strong person I saw myself as being. Conceited but not really it was just ME normally walking in someplace and now I am in such a ugly uncoordinated mess of it and I am a competitive sort I guess who doesn't want others to see me this way. You nailed my true feelings and I am processing this and just holding on to it a minute here because that is the true pain to be seen as inadequate and inferior. I don't see myself as superior for doing this challenge but I certainly see Bob that way and isn't that interesting that I can't see myself that way. A caregiver's perspective is so valuable. You see the strengths and gains and I see and feel the losses. I wish I could see and feel this differently. It helps to see it in writing and maybe it will imprint on my soul. I know I make this a bigger deal in my own mind than it probably is to anyone else and it is all meaningless vanity really and I need to take myself as I am which was never a big deal to begin and so who do I think I am lol. it is wonderful to hear about the healing inside for Bob to see he is still accepted and valued and to believe it in his heart. I think it also speaks about how special he is to others to begin with and I think you are a wonderful couple working through this together. I hope you also know how important you are in this script and what it means and says about you and your life as you participate in this. I think all caregivers are imposed upon by a situation imposed upon a loved one and they jump in and rescue when they are not the ones drowning and they could very well swim away but they don't. They are true heroes. It is really helpful to get feedback. I realize from reading these comments just how distorted my thinking has become in my fear. I fear being not accepted or valued anymore. But mostly I fear the loss of myself in this as it was pointed out I should still consider myself as ME but see I don't recognize myself sometimes in emotions or in this broken body. I need to learn to love myself in this wretched state even though I don't know how much I loved myself before this happened. If I can do this then there will be the brightest silver lining in all of this situation. I am glad that Bob and Dorothy are so loved and I thank you for sharing your story.

Every word touched my heart and soul and it is healing to be heard so thank you. Thanks Asha for encouraging me to have and to share a voice. Thank you for the perspective of someone living intertwined with a stroke survivor because I needed that. And thank you for your amazing story about your wife which gives me hope that I will be walking into my fav restraunt too sometime soon. I am impressed and overwhelmed by your story which is truly a love story as well as a story of survival and coping. I just need to read this a few times and process it and consider those new ways of viewing myself. I like that you pointed out that my power and control now lies in dealing with the effects of it.

Thanks Pearls and keep channeling Audrey Hepburn. I love the hat and sunglasses glam and you get to decide when to reveal or not, But you are not crazed and brain damaged in a negative sense at all although I usually say the same self-talk also. As Jill Taylor would point out some things changed and that is all. Some are darn inconvenient and others may not be appreciated yet but our brains are in transition which is opening up a new existence some mighty painful and other good things may be revealed as time passes if we are listening and looking. Which right now I am not because I am still complaining and grieving and who says that it isn't the right time to sit with my pain and just feel it although I hate it? I have to know what it is I am recovering from. I have to know what it is I feel. Pretending isn't possible for me right now and I am so over emotional but they tell me that the area of stroke does that for me yay -but it has settled down from what it was. So I know that spontaneous healing has gone on but I wanted to wake up readiy to walk down and get in my car you know. Not yet. Let my mind know that I am not decided on not being able to do this so I say NOT YET. You make me smile and laugh with every post so thank you so much. I bet all your smile needs is some lipstick. I hear that lipstick solves most of life's problems. but maybe that is a placebo effect. There is nothing superficial about make up when if brings out your inner, your best you. I want this to pass so much and I hate the big feet although these really are great shoes. I wake up with fear that it isn't going to go away ever and how will I survive this and then I just breathe and tell myself just this moment is all I have to do right now, It helps to be in denial and it helps to be honest and vent -both ways work for me so go figure. Maybe being a different kind of human is wonderful and it sounds like you are one of the survival of the fittest kind. Thanks for joining in my feelings about therapy. They haven't cheered me on like a trained seal yet but I went once and I have a feeling it may happen in the future visits, I was given exercises and instructions and these directions were repeated after she asked about my memory. She said that in he future she will give me instructions in writing even after I said my memory is fine. At least it has worked for a couple of exams. I was a bit disappointed that she talked so much we ran out of time to do much. I would prefer if we did the stuff and she did send home the discussion in writing but I a so glad to be there and apparently there is no real hurry in my case since all this is going to take a long time I am told. At least they don't say never. Yes getting out is key medicine. Preferably with an awesome carry bag for all the stuff I carry now like meds and the always necessary sweater. No more hot flashes these days.

I have not experienced a near death experience or any hallucinations like you describe but I have read about them and wonder about them. I am torn between belief in science or religion or mysticism and I believe in some reconciliation between all of that. Your experience has meaning for you and I can see that you have incorporated it into you life now and continue to search. I am on the same page with your idea about the deep breathing and yoga stuff because I have heard about others who find peace in the experience of meditation and deep breathing physically and mentally. I don't do yoga but I am interested in the integration of health and mental well being so I may get involved with it later for physical and mental benefits. What a wonderful experience to meet the French roommate and I wonder if that was what it was all about and what that meant for you and for his daughter. We often meet someone for a brief moment but our lives are impacted forever. Your intuneness (is that a word if not lets make it one) with yourself and whatever forces of your spirituality and openness with other people at least allowed for a unique interaction with a young woman struggling to deal with the loss of her parents in some form. I am just guessing of course because that is my penny's worth of thought. I hope that you continue searching and growing and sharing your insights,

Your words "our minds become cluttered with a lot of garbage of little significance. So, perhaps our memory loss is just a kind of spring cleaning!" are beautiful. What a profound perspective. It can be unsettling to find our minds are not the absolute and reliable things we have always believed are permanent and solid. But it sounds like the most important thing is still there for you. I like the thought that in a way we get a second chance to redecorate our minds and lives. I am inspired by all you write especially the piece about our minds as sand paintings blown away by winds. Yes, it is funny how I hold onto experiences and memories and even thoughts as if they are stone when in reality they are sand. Thank you for holding up a mirror to a different way to view things. I am amazed and inspired that you deal with your own and your spouse's challenges and press on too. And excuse me for saying but you Go for being 87 and on a blog on the computer because you just blow the stereotype of people of a certain age right out of the water. I hope you don't mind my saying so and when I start to get into my poor me agism stuff I am going to remember that age is unimportant and doesn't define me or anyone else. I hope you know how meaningful your blog is to me and probably to others. Thank you for your wisdom and heart.

I just wanted to say that when I first came home I was ashamed and embarrassed that I had a stroke and couldn't walk or see right. I hid. I didn't want anyone to know and when someone just saw me in the wheelchair I didn't want to answer questions. I couldn't look into people's faces then because the world was distorted even more that it is now. And I was glad. All my life I worked with people and I was avoiding it. It may be hard to imagine but I didn't talk to anyone about my feelings or thoughts and I was sick of the cliches they tossed at me to cheer me. I avoided thinking about stroke and didn't look up anything or deal with how I felt. Maybe I am still there but it really feels great to get all this off and out. I know that I am not alone and someone must get it and maybe it will help someone else to know that I get it. Mostly I had courage to blog because I was welcomed and understood here. It is healing to write this and to be supported. I will do my best to be honest and thanks for listening and for the opportunity to share and if it is all craziness then I'll blame it on the stroke. LOL see how fast I learned how to blame it ALL on the stroke, eh yeah well.

It feels like forever which is almost 5 months of waiting for outpatient PT at the hospital rehab center at the same hospital I was in for two weeks with the stroke. The delay is riidiculous but what can you do? They sent me home with a therapist coming to my home to give me PT rather than put me in the rehab center for some policy reason and the first week I was home and the first time the home PT person came he said I needed vestibular therapy which he couldn't provide. I said the PT therapist in the hospital said it was vestibular so I wonder why they sent me home therapy when I need outpatient. So then we went on the road to get the outpatient. The insurance wanted me to go to some other place that didn't have a vestibular therapist and they said they wouldn't take me. So then it just didn't happen. I had to file a complaint and then they said oh yeah we approved it all just tell us where you want to go and I did and it took another couple of months for them to coordinate the endless approval paperwork stuff and then to finally squeeze me into an appointment after another evaluation to see if I need vestibular therapy. I wish the insurance company could have successfully willed away my need for vestibular therapy because it certainly seemed they tried hard but alas it was not to be. I am finally going but not the twice a week they suggested because I am told that they are overbooked as it is and squeezing me in once per week in a particular time slot so take it or leave it. When I was in the hospital they said that I needed to be able to do 3 hours of therapy per day and then they said I was too functioning to go. So I don't know if I was too weak or too strong but I didn't get the super therapy treatment. I asked what the difference would be between the inpatient and the outpatient therapy and I expected them to say time spent in therapy doing this or that but the physical therapist said well inpatient is like a hotel that has to be paid for and outpatient you go home. LOL sorry perhaps it is just me but the word "inpatient" doesn't immediately associate with "hotel" for me, but just give me a minute. Ok so my hospital did have good food. Ok nice sheets. It stops there. Anyway I have worried over the missed window of opportunity that I may have benefited from intensive therapy. The docs say it isn't true and that the brain does what it does with or without therapy. What else can they say? There is not enough vestibular therapists around and therapy is a rare commodity around here then? I hope it was worth the wait since I am not getting the hotel version. I also didn't realize I could get some in home services. Wow. I left my hospital pretty ignorant of what kind of services are available out in the community like access to public transportation on a little shuttle that comes right to my doorstep. I just found out and so I gave the paperwork to my docs and now I play leave the reminder call game trying to get them to fill out forms. So far I have marked off 30 days of waiting and weekly calls. I am now probably marked as a nuisance but hey I have nothing but time on my hands now so I keep calling. I had a case manager for a minute in the hospital and when I left I called her and she said she just worked for while in the hospital and I said well what about for things that should have been done while I was in the hospital? Is it too late for those things now? The answer was a curt "yes." I have learned about things online or from waiting room chats with other people. Otherwise I am hopeful that therapy is the magic I need. I am in such pain and some is probably from this swelling in my legs and in my feet. I have been hospitalized for and all the tests come back good and the doc says it is the meds but he doesn't change them. In the meantime I have ankles the size of my thighs almost and my feet look and feel like they will explode at any moment. The doc said it isn't so bad while I explain that I had to buy these adorable shoes I am wearing in a size larger than normal to get out of slippers. They tell me that most of my meds cause swelling. Joy. So which one are they going to change first? So far in a couple of months they just listen to me complain about my swollen body and then have the nerve to remind me to watch my weight because I have put on pounds. Hello? I am a spongebob right now with a full load and what about this weight thing? My feet look like flintstone feet. There are swollen lumpy spots on my feet that are not normal. I don't know what else to do because I am going to the docs and the hospital and they give me a diuretic that doesn't work and then nothing. Do they not know what else to do or am I not complaining enough yet? I hope the therapist will have some suggestions or can raise some alarm to get them to do something. I soak my feet for some relief but that isn't doing anything for more than a minute. Everyone that looks at me says I am swollen, legs, feet, belly, face too but not the arms. I have asked to see a cardiologist but here we go again with the referrals game so good luck with that right. I may get one after the holidays maybe. The wheels move so slow. Ok as drugged as I am on Gaba and Norco 10s and I still feel like my feet are going to explode. I am still making it to class and it is unbelievable to me that I am able to do it. I worry that I won't be able to continue especially since I am on so much meds now. Speaking of meds as I keep taking more I worry about tolerance or is the pain really increasing over time? I tried to wean off the meds and it hurts so bad. So I need the meds and I don't believe in suffering. I want to keep on with finishing my dissertation and finish school. I had my stroke finals week but I returned a month and a half later and took the finals I missed and started in summer school. Now I am in the fall session and taking lighter load of classes in the middle of all this pain, pain meds, and physical things going on like weak and numb right side, vertigo, dizziness, and not walking or driving. I want my normal life back so I just sort of pretended I am not a stroke victim and just carried on. I was in denial and perhaps I still am and what is wrong with that if I can pull it off. I couldn't read right so I got some prism glasses which help off and on. When I am fatigued it will start in the eyes first. I read all I could in the hospital and when I came home. Reading is my life so I had to do it. I hope it helped. I also wrote weird in the hospital but I started a diary and I wrote in it constantly. I can see how my handwriting evolved back to normal almost but not quite the lovely script I had when young but it is better than the scrawling scratch after the stroke. I was really upset at the loss of my handwriting which is silly eh since I can't walk either. In the hospital I couldn't sit up either. I leaned to the side without being aware of it. I had to be propped with a pillow but that didn't last. I had trouble when i first came home but I kept sitting in a chair and on the computer reading and typing and then one day I didn't need a pillow. I can sit up on my own and balance now. I wish I could walk up and down my stairs and i am impatient for that to be something I can say is accomplished. When I woke in the hospital not walking or sitting up straight it was a shock. I came in with symptoms of listing to the left when I was walking. The ambulance came and I was admitted but I was not given that magic stroke medicine but I was put in ICU and then I was in a room. I guess I slept a whole day away in the room because the nurse came in and said she hadn't heard a peep from me to use the restroom and I slept through them coming in to do vitals. So I got up hungry of course. And then there I was not sitting up right and double vision not tracking couldn't look at a face even. That happens now when I get emotional. So I have improved. I am grateful but I want more. The emotional is the worst part of all. At first every little thing made me cry. I would be confused and cry. It still happens but not like the early days. No one was very understanding of the fact that I was in an alien body that didn't walk or sit up and was numb on one side as if a line had been drawn down the middle head to toe. And I was looking at a world that was spinning most of the time and I couldn't stand without falling to the left or when I did stand I would just get close to the bed to sit down and I would fall to the left even though I wasn't thinking of sitting yet. I would look to the left and just fall to the left. I was not the master of my own body. My vision made it much worse and still is contributing to the horror of this experience. if only I could see right and not be dizzy. When something is funny it is unusually funny to me and it physically hurts and the same is sad things. My emotional regulation is off and it physically hurts in the gut and head when I feel strong emotions. I can't handle the little bumps I usually handled. Forget about big ticket stress because I am unglued and sob. I sob when I think of how much I love my family and I sob when they screw up my prescription once again. Ok then they say this is normal post stroke and for my stroke location but hey no one in the rest of the real world knows this and I look like I just went bonkers poor dear. OR that I am some unstable crazy because I am constantly advocating for myself and that usually reduces me to tears but hey why can't they get it right? I had some help in the beginning but who wants to deal with this at the 5 month mark we are still dealing with insurance authorizations, appointment screw ups and this seems just to be a way of life in the medical world. They got sick of it. I can't escape it though. I often bargain and say look if you just let me walk and drive again and give me some other illness that at least I would have some control over my life and to be able to see so I can at least deal with the problems. All problems are overwhelming. I have someone in the insurance co and she is helpful sometimes.. I hear that all social workers are just over stretched and so there isn't much help really. My family helps but they have lives and mine is a bore now with the same problems over and over and it isn't even half a year and we are all screaming Uncle! Ok so not all days are bad and maybe in my next blog I will be in a cheeryho mood. Right now I am just feeling appreciation for the pain and breathing through the experience of loss and disappointment and owning it because I have the right to acknowledge the unwanted changes in my life and own body. How violated I feel that my body has been taken away from me. I am not the same and yet I cling onto what remains and try and keep my life and identity. I don't want to learn any profound life lessons right now, I want to walk again but I guess that as I journey through this recovery or acceptance phase that I will personally grow if I can shut up and listen to my inner self for a minute. I am angry. I am so mad at all I lost and I miss all I had even though I complained ...how I wish to go back to every single bit I complained about before. And how I fear I will be saying that about this time when the next stroke sneaks up and robs me again. I keep thinking of the day before it happened. I was at a mall and walking. I was with my daughter and we got starbucks and carried shopping bags of some really lucky sales findings and we sat at the water fountain enjoying the nice day. I remember dodging the other shoppers and riding the escalator. Walking is such a joy. Carrying a purse on your shoulder or arm and it isn't the same holding it in a wheelchair. I have clothes made to walk in. the way the fabric moves, the cut or lace on a shirt with scarf edges. Shoes. These feet may never wear delicate straps again. Right now I wish I could wear my tennies. Oh that wonderful day the time before the stroke. I have had nice days since then but not really. I have ok moments when it doesnt matter but I have awful moments when I cry and rage and beg and bargain. I don't think I am out of denial that this is even happening. Maybe that is good. maybe I will pretend to be normal and carry on as if I was and wouldn't it be great if I could master that. But we will see if it comes crashing down. Reality. Well my hands hurt from typing so much. Talking is the only thing left. I have never blogged before. I have done plenty of diary stuff so it shouldn't be so bad but this is hopefully for someone else besides me but I really need the support because I don't know how to do this really. What has ever prepared me for this? maybe someone else knows. I am lost in a foreign land and everything is strange and frightening and I don't like it. I want to find my way home again but I have a feeling I will never get back to Kansas or find Toto again.

Isn't it wonderful to have part of yourself returned! I am so happy for you! I know that handwriting is a huge deal. It is uniquely ours, represents us, and is a defining feature of our identity. It is important and that is why we use cards and written letters even today. It is also reason to celebrate and hope because this is an example of the brain doing things to heal even without us knowing it, I had similar situation with handwriting. I didn't recognize my signature. I was doing exercises for hand eye coordination on my own in the hospital and I began keeping a handwritten diary too. I can look at that diary and see the progression of improvements in my writing, How weird is that. Anyway as I have aged my handwriting has changed as my hands suffer from carpal tunnel and tendonitis. But nothing like stroke. I was happy too when my handwriting returned to close to normal and I felt that my signature was familiar. Just one little piece added back means so much. Enjoy your success. I hope that means your vision and other areas of coordination are improving too,

Pearls I totally understand about the pants because I had a stoke right after getting out of the shower and the paramedics came and I had put on some clothes but I had no make up and my hair was not even combed. And I did care but did not care and wondered why in the world did I care. I liked it that you chose to live and I think you are needed here by those that love you and those that meet you. The part about helicopters sounds terrifying with or without wine. Your entrance to the hospital was much more grand than mine and it sounds like they did an amazing job taking care of you. It is unsettling to not remember pieces but as long as you had a comforted sense of calm and slept through the storm then it is good then. I remember when the fog cleared nad I had my anxiety attack in the hospital and they asked if I had panic attacks before and I said hey I never had a stroke before and lost my life before so no I guess not but I am panicking now. Why do they ask you to be friendly at at time like this? Oh HI, howsitgoing? Just want to compliment your hospital chef and have you seen many patients today or were you stuck in traffic on your way here? OMG so many things you want to say need to be filtered. And in the beginning there is a fog of disbelief that takes a while to roll away.