• entries
  • comments
  • views

Happy Strokaversary



.GymSO THIS IS MY 6TH YEAR! I am blessed. I think. I am not much changed in the pandemic living in a nursing home. I see people every day so I'm not really isolated. So it's scary. But then again I am grateful for the help and Company. But they have us isolated from each other so I miss seeing my friends. But I see plenty of staff so I don't see how I am that much more protected because the staff are out in the world and my next door neighbor is not. So some of us have going into each other's rooms anyway because there are some people that because they have dementia they are put out into the hallway because they need the nurses to keep an eye on them. So on Mother's Day one of the ladies who is like a mother to me came into my room and shared a pizza with me and we had a good laugh and played some cards like we used to. We have lost quite a few friends this year and who knows if it was due to the pandemic but we toasted them. Anyway the nurse is here some of them are paranoid and they don't want to get near you when you are ill. I can't explain how that makes you feel. When I had sinusitis really bad and one of the nurses was standing across the room and I needed my wound dressing on my foot changed and she wouldn't do it and kept saying it was somebody else's job and something in me snapped and I said to her that I don't care virus or not you don't leave a human being in pain and you don't become a nurse if you can stand by and see someone asking for help. Anyway that nurse was having some sort of breakdown and kept saying that she helped me and that God knew that she helped me so anyway I can see that the people on the front lines are gyros but when you're in a nursing home I know ready feeling abandoned and not being able to see my son has been very hard. He brought me a care about Sunday and I said maybe I could wave to you at the window and then I said no I don't think I could see you I would break down and who knows I might make a break for the doors even though I don't move very quickly LOL. My son agreed and said no the windows are the worst. We are close and she knows how emotional I get in fact what do you use to surprise me and come home and I would literally be doing something in the closet and then I would walk out of the closet and there you'd be standing in my bedroom and I would just be so overcome that I would just scream and scream and cry and say oh my God you're here you're here you're really here and I'd squeeze them to death and you know it would just be so emotional so wonderful but that's why I think I could never tolerate being outside the window and not being able to touch him. So for now we don't even Zoom we just text and then I said I want to hear your voice on Mother's Day I just want to hear you I'm so he did he called me and I swear we were on the phone all afternoon Into the Night and finally he said well Mom I think I got to go eat now and I said do you think that you could eat and still be on the phone with me and of course I was just joking no I was not. But anyway he wins and as soon as I got off the phone I just broke down and wept because it had been a wonderful conversation we talked about everything Google things and we talked about gaming and we even shop together on Amazon 4 our friend that you went to HighSchool with and she married her high school sweetheart and they had a Harry Potter themed wedding and so we were looking for things for the baby and we found some very cute Star Wars sayings to in fact I bought a hand-knitted beanie that was R 2 d 2 and it's so adorable and I bought it large so it won't really fit a newborn but it will fit up to 12 months that way and I was telling my son that way the baby can use it longer and he laughed and he said well Mom you're more experienced in that then I am! So then he was telling me about putting together a computer and I was looking on Amazon and computer parts and if somebody had told me that I'd ever be doing that in my lifetime I would have laughed but I just so enjoyed spending time on the phone with him looking at computer parts it seemed fun! But sadly it was time to go back to texting which is okay really. But he is my reason for surviving I know so my daughter more so my daughter because she needed me so much At that time. But I have not heard from her again his chosen that and it is broken my heart Beyond Reason I did not bear to even talk about it end so we will not losing a child in any fashion is intolerable not natural. Those Soul cannot bear it so my love goes to my son and I don't pretend to be whole but we are both damaged and we have to be there each other. I hope my daughter is happy in her life I truly do but she has left us us in ruin but as her mother I have no choice but to go on loving her and this is my ruin. My best friend says leave the door open and I get so angry because I say it's never been closed never and it never could be. I cannot think of my stroke recovery without mentioning her she was my angel is it yet I think that was the how things went so wrong her being my caretaker at the time was all we could do I was so angry because she was just a kid and she took care of me and then I couldn't it didn't work out that way and so I had to go to the nursing home and she didn't have anywhere to go to and so she went with some friends and I'm afraid my family was not good and losing our our home is something that she's never forgiven me for even though it wasn't really my fault it was all my fault I'm the one that had the stroke and that suffering from stroke I was fixing up the house and she had fixed up her room and we were so very happy but I was denied my disability and then of course later on in the nursing home I was granted it but it's just too late and my daughter is bitter and so anyway she has a beautiful son now and I see him grow up from a distance because he's mostly with his dad which is good because he's a good provider his family is good to their grandson.


This is not how I thought my life would be. But my best friend tells me that she has two grandsons and she hardly ever gets to see them and she always thought that she would be the main babysitter but she's not she's the only invited occasionally and then they don't really leave the boys with her she just visits and so she never gets a chance to bring them to her house but that's the way the mother wants it. Now she has a daughter that's getting married and she's hoping that so be a grandmother a real grandmother that gets to spend time with the kids and drive them around.


Look at us making plans for the future and who knows. When I think of all the plans that I had made and I see the tatters of them blowing in the wind still and I can see the things but I had hoped for but look at what became of them and I know that we can only live for what now and be grateful for what is now because things change suddenly. Suddenly is the word for it suddenly. Right now the world is receiving that thief in the night that steals dreams. I keep hearing people say it was sudden. People became ill and then suddenly they died. And lives were changed dreams were stolen. The dreams of the young even has been impacted. Perhaps that's why they dance on the beach not worrying about the pandemic for the day despite the risk. And I can understand that needing to be a free spirit and wanting to rebelled against what destiny it's forcing on us but this is showing us that we do not live for ourselves we must protect each other we are each other's caregivers. We cannot survive without each other. And we are granted life because of each other's lives. But I am so sorry that the Young struggle with this concept but I too was once Young and I won't call it a selfishness just self preservation and that self-preservation means protecting one's dreams. Charity means reality so let me stop talking about dreams and talk about what my anniversary means for me in this world today. Well my son said that his life really had not changed very much because he basically went to work and came home and then went to work came home. So he is an essential worker and so working for lab he has been quite busy and working at a lot of overtime now. I don't know the details so anyway they do a lot of online gaming and he has put me in touch with all this gaming stuff I don't play with them but I do a lot of gaming now. and I also do a lot of coloring one of the members here dearest Pearl Wherever You Are I love you and I thank you and I've colored probably 50 books flying all over the place and I've had nurses ask me to color them things and they framed them and put them in their homes and right now I've stopped working on peacocks for a while and I know I have five books of fairies and I plan on putting them in the bathroom did decorate my room so much they don't have any room but some people have told me I owe this one's my favorite and so I plan on giving some more away


No 6 years later as I've said I still have pain that is not any better unfortunately as they have predicted the medication does not work as well. After I had my heart attack I met with my doctor and I said that I did not feel comfortable going ahead with the surgery to get the electrodes. I am afraid I said. I could see the disappointment in the doctor's eyes he invested a lot of time and effort and I said for now anyway is how I feel maybe in time when I am not so afraid of having another heart attack if I can just let myself heal from just having stents put in my heart and perhaps get my walking back to where it was because right now I'm in a wheelchair I'm having trouble with sores on my feet again and I told him that my kidneys were not working very well I just had bronchitis at the dime and so I said I just don't feel strong enough right now the plan for surgery and that was right before the world stopped all surgeries. So I guess I made the right call for myself anyway so I still need to go in and have a procedure for blood clot in my leg that were found right around the time I was sick and so now I wonder a lot about what is going on with my health at this point but all they do here at the nursing home is just a lot of nothing and that's why I'm going to outside doctors. So because of that I wanted to put that electrode option on hold. So now I rely on drugs and so it takes a little extra because now I can't even get the spinal RFA that I was used to getting. It doesn't work as well and I suffered a lot on many days and then other days I'm okay and I'm all right and people see me be okay on those days and they think I'm just a big faker. Well too bad. Now what is improved is many days my balance I can walk with my cane in my room and I never thought that that would happen again when I first had my stroke I was in the wheelchair and I couldn't sit up straight. So for all those newbies I'm doing will they ever be the same this is all I can offer is that for me I could not even sit up in the bed that first week of May of my stroke and I had to be in a wheelchair that first year nearly but I could still learn to walk with the Walker during that time and I got my three-wheel walker after my four-wheel Walker which really helped me learn to balance better as well now that I had these problems with my sores I have to go back and get stronger and get a little bit more balanced he used the three wheeler but this minor setback I know that I can get my strength back up soon and if I could just stop getting sores on my field which is another page so I offer this keep hope alive keep working hard at whatever you need to relearn because it happened slowly but surely but you not ever be fooled by a doctor that tells you as they did me that you're going to be just fine in 12 months and that is stroke was minor you're going to be okay back to work twiddle Dee Dee. when I went to a real neurologist he said to me that I had a lacunar stroke they knew precisely where it was and what it did and why and it was all explained there was no great mystery and also warned me against some of the treatments that he said his colleagues were even working on but I pressed him instead what would you tell your own wife and daughter he said just be careful about things that cannot be removed be careful about brain implant do more damage then what they're in there to fix. And so this highly esteemed neurologist in one of the best places on Earth to be treated for a stroke he told me that sometimes there are changes it happened slowly overtime but in his experience lost time what is now is as good as it gets. I'm afraid that he did not destroy my hopes because you see I was more destroyed when I was waiting for something that never happened he gave me a gift of hope that was based in reality and gave me something to work toward and a place to see an experience changes that I could be grateful for and he gave me a life that I could make realistic decisions about. and it was the right choices because over time I've needed the nursing care for more than just stroke related things and I needed more than just a little bit of help around the house. when I came to this nursing home my pain was not under control and so I spent a lot of nights screaming better now and I am grateful.


 I don't know what the world will be like later but for now I am okay and life is it's not what I thought it would be right after my stroke I thought I would make a full recovery but I didn't and yet I'm okay with how things turned out but I still sometimes find myself weeping so what I lost but I know that that's a waste of time but sometimes I have to indulge myself but most of all I have to protect myself from going to that dark place And I has to stay positive about making some of those realistic changes. today I have a cane but I'm not allowed to walk alone I must have someone's arm to hold onto and most of the time I don't want to fall in the restaurant so I will take my three-wheel walker I highly recommend a three wheeled walker and I got that after I had the four-wheel Walker. I still use my four-wheel Walker at night because it gives me more stability I also use my wheelchair periodically when I'm supposed to stay off my heel when it is healing from the store. I also take my wheelchair when I know that I'm going to be required to walk farther than I can I'm supposed to be getting all these things replaced for free. Ask your doctor if they know about the diabetic shoe program is another advice I would give to a newbie


So I've had improvements and my double vision sometimes but it other times it goes back to what it was and I've had improvements in this shaky hands the involuntary movements which may be because of the medication or maybe the tremor from stroke and that will come and go on days to and the fatigue though is constant and a lot of the nurses they will it's the drugs that you're on they make you tired I changed some but basically come through I always need a nap and my son says that between 3 and 5 it's better if I nap and sometimes I just nap in the car when we've been out and then I'm good to go in the evening another thing that may or not have to do with my stroke thing is that I have sleep apnea and that's another page 2 and so I use oxygen now not for COPD but because of the medication for my heart to that I'm taking 1 year. So anyway it may be that I have to live with pulmonary hypertension but that's not related to my stroke so other health problems of creeped out on me I'm very very grateful I'm glad to be alive even though I don't have a lot of nice little stories to tell our pictures to show are those the thankfully is not paralyzed but my life was damaged more than my body I think


 so my heart goes out to those who are suffering in this pandemic economic hardship is something real and serious and I don't know what I would suggest but I know that I was young and not thinking about retirement I thought I had many years ahead to do that and then when I most needed disability I kept being denied and then right before I went into the nursing home and it was too late by then the damage has been done and I just went ahead and went in the nursing home which was the right thing to do because it gave my children their lives back and I think that in the end it is saved my life and helped me with my stroke recovery and so I dream some day of getting out of here and maybe the world will be a different place I don't know maybe that was my destiny because I know I'm protected in here who knows who knows and it's very hard to say why something goes this way and why some and it's hard to predict and it's hard to a place to be. but my best friend says just be glad that you are safe and taking care of and I know that to be true there are people on the street that need to be in nursing homes and so I will remain grateful and fight to be alive we only get one life so keep fighting and why because our children need us

1 Comment

Recommended Comments

Isolation is hard, I have been home for most of the past nine weeks. I of course can go out into my garden and shopping once a week and  cannot imagine how much harder it is for you with just a room. The attitude of the nurse who refused to help you does show how scared some people are of this virus. It is hard on you that she wouldn't help you, she should have stayed at home instead of coming to work and NOT working. Glad you spent that time with your son on the phone, just to hear a human voice makes so much difference. I hear the four kids playing in their yard next door and that lifts my heart. One day this will be over and another chapter of our life will begin.

Link to comment
Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.