A blog is a personal journal of your daily life as a stroke survivor or stroke caregiver. Surprisingly, countless members have called it therapeautic to write down their thoughts and to vent their frustrations. You can make it private, just for your eyes or public and share your personal thoughts with your friends. Why not try it, create your blog and start writing and see if it helps you.
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I had a funny phone call from a friend this morning. She and her husband had been to an Anzac Day Dawn Service. Somehow with all the items that needed to be plugged in at the Town Hall the power circuit blew and the town descended into darkness. An electrician was called of and finally fixed the power and the ceremony recommenced. But when she glanced up at the Town Hall clock it was slowly going backwards! Her husband is a clockmaker so after a hasty breakfast he went to fix the clock. I won't go into details but apparently there is a switch that stops the hands when the power goes off but it had malfunctioned and the hands started winding backwards instead of forwards. I was taken by this story because it is so similar to our own stroke journey.
Every time my Ray had a stroke our time started to wind backwards, back to hospital, back to the wheelchair, back to therapy. My time would be taken up by putting Ray through the recovery process and when we finally came back to our regular routine large chunks of time had passed and our friends had moved on without us again. I resented this somewhat but realised that it was our life now. We had some good times between the strokes and I look back on those happy memories now and appreciate what we were able to do. But I also regret some of the things we were not able to do, like the travelling we had planned and just normal things like attending the milestone parties (50,60,70) of our friends, the family engagements, weddings etc, a part of what would have been our normal life without the strokes. But for me the learning on the journey is what sustains me now. The ability to overcome obstacles and play down fears.
As I write this jet planes are flying overhead, there will be many Anzac ceremonies today and with some of them there will be a fly past, an acknowledgement of what the Air Forces contributed to the various engagements, particularly in the Second World War. I don't attend the Dawn service these days, I had a lot of years attending with my children when they were Scouts, Guides, Venturers etc. I remember crisp and misty dawns, both in inland towns and on the Central Coast, the brilliant sunrises, the scuffling feet of the young, the servicemen at attention around the Cenotaph, the trumpets playing the Last Post. After breakfast we then watched the handful of veterans marching at 11am with school children, the Junior Red Cross and the various Scout groups making up the bulk of the march with, if we were lucky, the town band accompanying them, depending on where we lived. Now I watch the marches on television. Without that other person to want to be at the ceremonies I find myself unmotivated to attend.
Unmotivated is what I am sometimes. I know now why elderly widows are not seen out and about. It takes an effort to go places that others take for granted. I go out because I have something I need to do, to socialise and to simply be where people are. During the last two weeks, which were school holidays, a lot of my neighbours were away for a week or so so not a lot of movement around my neighbourhood, not a lot of people going by on foot, except early in the morning when the dog walkers are out in force, really no-one to engage with. This is symbolic of the lead up to winter, the time when people will be more inside their homes and less out on the streets. I always find winter a problem as there is less socialising and more time spent indoors. Then it is a real effort to find someone to talk to so my chat group I have joined in the shopping centre will be a good place to go of a morning for coffee and a chat. I really need those places to go to meet people.
As I will be 70 in June I do qualify as "elderly" now. I don't feel that way but when I look in the mirror I see this grey haired woman looking back at me. I could dye the hair but the face, the hands etc would still give my age away. I don't worry about the wrinkles, I have earned those but I do care about the creaking knees and other parts of my frame that do not work as well as they used to do. Like others I sit up, put my feet over the side of the bed and hope everything works for the day ahead. That is why we lump age and disability together as age brings it's own disabilities. And there is no winding time backwards from that. Keeping as fit as I can, eating healthy food, keeping my mind sharp ( I played Carnival Games on my Nintendo Wii this morning as a self-challenge) is what life is all about now. And just going out and about doing whatever seems right for me to do. Today it is gardening, tomorrow it will be visiting nursing homes etc. What I need is a routine with some flexibility so I can do other things if I want to.
In two days time I will have lunch with my Adelaide grandchildren and their mother as they are up with their mother for the school holidays.. I usually see them once each school holidays, that is four times a year. It is not as often as I would like but it works to keep us in touch. Every time I see them I see changes in them, they are growing taller, talking about different things, they change slowly but to me seeing them only a few times a year it seems much faster. They do not show the interest in me they used to, I am just the Granma who lives on the Central Coast now. They are polite to me but not loving. I guess that is partly due to the modern way of life and there is not turning back from that. Maybe if they lived closer we would be more closely bonded but maybe not as family life is much different to what it was when I was young. I don't think my children realise how much I as a grandparent look forward to their visit, that glimpse of what the life ahead is for them as they grow up. I love them and miss them living close by as they once did.
For us older folk who remember way back it is sad sometimes to realise that the majority of our good times are behind us now. That the way of life we once knew is fading and that the generations between the Wars have passed on. Today, as I looked at the veterans marching in Sydney on my television, it was obvious that many marched on behalf of others who were no longer able to march, parents, grandparents and even great grandparents in the case of younger children. That doesn't mean that the march had less meaning or that we shouldn't remember, just that we are getting further from the memories of the two World Wars now and the older folk marching are from later conflicts. I believe in making memorials, I just know that as time passes that they mean less to us. It is good to be aware of the history of our countries and the history of conflict is a part of that.
Lest we forget.
Eating healthy can be challenging especially when I have multiple food allergies. Lactose, a common allergy to the enzymes often found in dairy products and Soy, which is found in EVERYTHING. So I’ve learned to make my own “Buttery Spread’ which isn’t always a butter but a combination of coconut milk and millet. I could go out to buy the butter that is Lactose and Soy free but for a little tub can cost me anywhere from $4.00 to $6.00, and being on a fixed income, is too much for my wallet.
I was told to eat protein bars... that sounds simple enough. However, everything has soy in it. The ingredients may not say SOY:
Edamame , Miso, Natto, Shoyu, Soy (soy albumin, soy cheese, soy fiber, soy flour, soy grits, soy ice cream, soy milk, soy nuts, soy sprouts, soy yogurt) , Soya, Soybean (curd, granules), Soy protein (concentrate, hydrolyzed, isolate) , Soy sauce , Tamari, Tempeh, Textured vegetable protein (TVP) , Tofu.
(Some of the foods that have these names in there I don’t eat because of sodium)
And I’ve learned to read everything. Thank goodness there are cookbooks out there that cater to my allergies. True, it’s not common, but it’s out there. So my kitchen looks like a health food market.
“Was I always this way?’
I started to show digestive problems with Lactose while I was pregnant with my youngest son. I didn’t like cheese but there are some foods with cheese I love to eat. It started with the usual stomach cramps but over time it started to go from pains to gas and diarrhea on top of my cramps. So from there I went to Soy milk. I still had the bloating, gas, cramps associated with lactose. It never crossed my mind for a while for I just thought it was still something to do with the lactose in my coffee or ice cream. The pain became too much for me to handle. I began to go online and research allergic reactions of soy. All of the things I’ve been dealing with was listed in front of me but with everything you read on line isn’t always true. So I started a self-test. I went to Starbucks coffee because they had Coconut Milk and I already checked the label to make sure there was no soy. I drank my usual coffee order but this time with coconut milk and something amazing happened…. NO STOMACH ISSUES.
From there, I looked up all the other names for soy and began to see how many food items have it in it. Again, being on a fixed income, I had to order many foods online for finding specialty foods can be hard.
Instead of always spending money all the time, I’m trying to make my own, Makes me more mindful of what goes into my mouth.
Avocados, blueberries also cause me stomach issues. Which makes sense for I’m allergic to Latex. Some of the same enzymes in avocados are found in latex. Strange but true.
So I can eat wood, stones and maybe grass hahahahaha
I am by nature fun loving person like to be always laughing cracking jokes on myself or hubby. hubby can find good in any dire situation where as I can not, but having him by my side, I know we can get through anything in the world. any how some days I feel so grateful to be still here & love my life, some days feels like blah. I guess that is how life is for every one. In summer hubby usually play volleyball with his friends in park while I walk in their beautiful walking trail of park. ran into some woman who told me oh great keep on pushing & if you exercise your hand then maybe that will start working too, I get very offended when people assume & make that kind of comments, though after talking with her I found out she was brain surgery survivor too though for her everything started working thanks to her therapy was her claim. though knowing she was survivor that made me less angry though I educated her about how every brain injury is different than others, & you can not compare your recovery to mine to make any judgments on it.
I love Spring! New life, warmer weather, no insects... then why am I so miserable? I figured it out; when it's either hot and humid or cold and icy, I don't mind being inside; heck I prefer it!
I am physically unable to do much of anything. Rake? Pull dead grass? Take a drive somewhere with the dog and hike? Nope, nope and nope. I'm usually able to accept my new life, yet I still have days when I want to shake my fist to the sky and yell, "THIS REALLY SUCKS!"
So I sit on the porch with my pooch, feel the warmer breeze on my face, notice that my rose bush has buds on it, and be grateful that I can get to the porch, feel the breeze on my face, and see those buds...
This is poetry I wrote this morning. It is dark and not beautiful but this is how I express my heartache. Inspired by something happening in my life right now. Please close if you are bothered I will speak sunshine another day.
Round and round and round we go,
A cursed circle with no control.
Weaving a web as it moves around,
Looking for trusting hearts and souls to be found.
It spins with no effort and catches its' prey,
Waiting and lying and hiding each day.
Then it spins its' catch in a safe, warm cocoon,
Laughing as he relishes the next meal coming soon.
You lie helpless and warm not a worry not a care,
Because you have no idea that you are deep in his lair.
There he nourishes you and feeds you his warm meal of lies,
Keeping you safe and well serviced...His own plan he denies.
Building and growing a bond and a trust,
Filling your dreams with what seems magical dust.
Soon there is movement and the circle speeds up,
As he spins his web to catch a new unknowing pup.
He gingerly tucks her neat and trusting in a new fluffy bed,
Not knowing behind her the innocence will shed.
It's now that I open my eyes to peer out,
To see the light fading quickly,
And there is no way out.
He rises and pierces the heart of his prey,
Excruciating, awareness no words can convey.
He devours every trust every dream and all that is good,
leaving you desperate for salvation but no one could.
Discarding the shell of who you once were,
He tip toes back and whispers to her.
Caretaking was too much for my two beautiful superheroes in their young 20s. I would not have done well either. But my kids did help me recover and be realistic about tough stuff. Many memories of my kids wheeling me to class. one professor told me to look at the audience and not my tablet. lol I could hardly see to read. But I got my daughter grown up a tiny bit more just enough to want to fly off on her own. I am proud of both of my kids who saved me in some way. Their love sustains me. Oh it was hard. I made mistakes. I still do. I am grateful I got to see the human being, The persons that I shared my life and values with. No regrets. It was ordained to be just as it is. We grow no matter what. Gosh the memories. never planned much but always a wondrous outcome.
Now I pray for healing in all of us. My daughter will be a fantastic mother as she mothered me. My son troubleshooter steady reliable. I wanted you both to be together always supporting loving. Forgive me for having a stroke. Love eachother and me again.
I tired of pretending that the stroke brought out some hidden best in all of us. No it brought out some ugliness selfishness fear with the beauty of love and peace. Losses of those who were not strong or loyal.
Thank you heros this anniversary is for you. celebrate all you did and do. No mistakes only moments of growing. some funny like my wheelchair stuck on trolley tracks.
I am sorry for things. I want to hold my kids and grandson. This is my 3 yr soon and My family is broken like my body my world. we have good moments but stroke is real hard for us. No cinderellas here. maybe it helps someone else to know some real here.
Just please pray for us. And praise God and my angels and my children. And my ancestors watching over us.
It was a moment in early fall when my husband, like he always did on his day off from work, went outside to cut the grass. As he stepped out onto the back patio he heard the sound of humming. Perhaps it could be described as a gentle whispering of the wind like that through a whistle or more specifically a tone from a tuning fork. Regardless, my husband looked up into the sky thinking there might be some sort of spaceship overhead causing the hypnotic sound he was hearing. But, instead, he witnessed a moment he will never forget. There in the back yard, as well as the prairie field behind it, was a migration of dragonflies.
Now it is a common thing for dragonflies to migrate south for the winter. It is just like ducks and birds going where it is warm when the cold spell hits. Why the dragonflies are mystical in this case is they usually flock to watering holes. Dragonflies by nature are bountiful along a lake or river. So, when my husband saw this flight of the dragonflies in our back yard he ran inside and grabbed his video recorder. With out further hesitation he filmed for a good five minutes these winged creatures fluttering around our Texas hot prairie land.
As I viewed the video myself I exclaimed “Ten thousand angels…Honey, you were blessed by a visit from ten thousand angels.” Certainly, my response when he shared the experience of that once in a life time day was of elation and praise to one higher than one’s self. Of course, one might argue that angels and dragonflies are two separate things. I for one lean to the side of blessings and find comfort in believing these unique shaped insects are angels watching over me.
Obviously, there is a verse from the gospel of Matthew that I borrow from and/or reflect upon with the mention of legions of angels. In this Bible scripture it uses the word legions, but there is a song written by Ray Overholt based on that scripture and he titled his song ten thousand angels. The song chorus states…He could have called ten thousand angels to set him free. O.K. I might be getting of course a bit, yet I felt I should clarify my initial reaction to this epic event.
So, today, my husband and I went to our favorite restaurant with the patio that overlooks a lake. While we sat and enjoyed the sunlight beaming down and the gentle breeze cooling our face my husband noticed a dragonfly frolicking about. As he watched it dance among the cattails and water lilies he talked nonstop. He reflected back to a day of old; A day when he wasn’t in a wheelchair and had use of his left side. He started talking about the day he saw a legion of dragonflies. He told me the story with every detail, like it was a moment that just happened. We talked about how he recorded that momentous event and how we would watch it when we got home. Basically, my stroke survivor, in that moment was simply my husband. He, was my husband, the man visited by ten thousand angels…
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It has been years since posting here or replying to content. Too busy living life. Just got back from a two week trip to Spain. I keep busy updating my personal blog and writing chapters in a collaborative stroke book. I barely have enough time writing 5-25 posts a day to visit stroke forums along with a full time job. Deans' Stroke Musings for those who aren't offended by swearing. 11 years and having the time of my life. My 10,000 step a day goal has been going strong for 13 weeks.
I'm just sitting here bored out of my mind. there is no one down in the Social Room I want to visit with. (I live in an Independent Living Senior apartment building-I'm the youngest one here by a few years). There isn't anything on tv except for all the controversy surrounding "you know who" for a while until baseball comes on. was supposed to have an MRI yesterday but the machine broke Monday night so now I have to wait until May1. Have a 48 hour EEG coming up next Mon-Wed. decided to stop my volunteer work with the local bus company because I was concerned about being out with a group and having one of my episodes. I was a Mobility Mentor-we go with seniors/disabled on the bus to appointments/shopping/outings. We show them how to ride the bus and help them get there and back home. I'm also the Activities Coordinator for the Mobility Travel Club I set up here in my building-I look for things for the travel club to do and schedules the outings. having one of my episodes and not feeling to hot but don't want to go be alone in my apartment. I will be so glad when we figure out what is going on with me and takes steps to resolve these issues. of course that may not happen, but I am hopeful.
I'm ashamed to say I have not been on here for a long time. Larry has had some health issues lately. I was in the hospital overnight for the first time in 30 years due to a blood pressure problem. Luckily my son was able to be here to take care of Larry. Fortunately I was only in the hospital for one night but I need to plan a "what if" should I be unable to take care of him for a longer period next time. You never know what is around the corner.
For the second time since the end of 2014 Larry had another battle with aspiration pnuemonia. He was doing well on the feeding tube after we got him on the right formula two years ago. He finally gained weight and was at 183. This last hospitalization knocked the daylights out of him. He was in the hospital for a couple of weeks and then in the short term rehab for another month. Due to all the antibiotics he was taking, he contracted C-Diff. He continued to work hard in therapy which helped. He was able to come home but it took a while before he was able to walk with his cane again. I couldn't get our good physical therapist until 5 days later. He has made good progress and is walking again with his cane and transferring well. He had his 7th stroke anniversary in February. I can tell he has declined some over the years but I am happy I was able to get him back home again. He is looking forward to watching our first Cardinal home game this Sunday.
We are lucky that we have not had any snow to speak of so far. Spring is starting early here.
My best to all,
I thought I would write more often, but this seems to be the pace.
I stopped going to our Older Persons Center (OPC) where I would work out on the rehab exercise machines. I was trying to see if I could get off Ambien and get my head to quit hurting all the time. It is so tiring. So far no luck. I went to a new neurologist last month who specializes in chronic head aches to see if there is another approach. She has me on Pamelor which is supposed to make you sleepy. Not me, just kinda excited, but very tired. Weird. But I have to build up the dose over a few months to see if there is improvement. It's some sort of antidepressant, but fortunately I don't need it for that. S'pposed to help with nerve pain and interupt the feedback look for pain. If not, then try something else.
Social security decided that I was disabled. I thought I would be glad to get that decision. But it created weird feeling. I know I am disabled, but I don't want other people telling me that. It seemed like a jail sentence. It was faster decision than I thought it would take, guess I am more messed up than I thought. Oh well, I keep telling myself I will still walk the Appalachian Trail, so maybe something will happen. So far I've only walked a few hundred yards on that point between Tennessee and North Carolina, pre-stroke.
It's time to get the garden started. Got some seeds planted indoors. Now I have to build a cover for my garden so that deer, rabbits, and ground hogs don't eat everything. This has been a constant battle. Hopefully I will get more of my vegs than I give to them this last year. Animals 100, John 0.
I saved some tomato seeds from an Heirloom a few years ago and decided this year to try them. They have started to grow. first step. Now to grow them and see what I got. I don't know what they are. In my haste back then I only labeled the envelope heirloom seeds. Duh, what one? Sometimes I get so frustrated with me. Why did I think I would remember the type? Oh well. If I can get them to grow and the deer don't eat the blooms like last year, I will find out if they are cherry or larger. I am hoping they are cherry. if so I know they are Ruby Pearls. So have been the best small cherry - grape sized I have ever eaten. So sweet. Others are good, but these are just a little better.
I'm always open to better ways to garden, so if you have tricks, I'm all ears. Thanks,
all for now, Have a Great Day everyone!
Lesley is preparing to go back to New Zealand next week, April 3. She will be there three weeks. Then, surprise, surprise, she will be selling the house and bringing mum back to live with is permanently! Mum has initiated the conversation this time all by herself. She is now lonely and feels deserted. The two great grand daughters have both passed thru her house on short term stays in the past 8 months and both are busy living their lives. One is 20, the other 18. So, school, jobs, boys, etc are more important than spending much time with nana.
The pace of the life of the young ones has left her puzzled, wishing for days gone by, and most of all lonely for someone just to spend an evening with her. The grandson is also living his life with a new girlfriend and job, band, etc.
thus she has opted to come spend her last days (she is 94)with us. She still lives in a three bedroom house alone, fixes her own meals and with a walker gets around pretty well. Her mind is sharp as a tack. We had noticed in the past few months she was becoming somewhat despondent in her daily call from Lesley. Now since making the decision to come here her voice is full of excitement and hope that had bee lacking for awhile.
i have been in contact wil an immigration lawyer, and all is set up there to get her permanent residence status and health insurance. That process should take 6 months or so.
She did travel with us in the motorhome before when Lesley was a full time travel nurse about 12 years ago. Mum loves to travel and is already talking about doing so again. I am putting an electric lift in the motorhome to give her easy access and so she and us will not have to worry about steps. Exactly where we will go is now up in the air since she cannot go out of the USA while her permanent resident status is being finalized. So the trip to the Canadian Maritimes we had planned this fall is on hold for a year or two. She has always wanted to see the Rocky Mountains of British Columbia, so as soon as we can do that with her, that will be the next big trip outside the USA.
So, that is our big news. Lesley is off with a girlfriend getting her hair pretty for the trip to NZ next week Since I do not have that need, I am home with the dogs watching the blue birds nest in the new birdhouse I just put up. We now have three bird houses up just the right size for bluebirds, and all have a lot of activity today as spring is son coming here.
my coffee/tea cup is empty, so bye for now....
I guess I do not know much about living just today but at dinner as I sat in the dining room eating with some residents and one caregiver of one resident who has become a friend....I looked around and realized I have been here comfortable with the fact I am in the middle of a place in which so many personalities dwell in their own story lines as staff or patient and I belong....maybe not my choosing...but I felt warm fuzzy love for my companions in the room. I have been away dining in my room with roommate watching shows or just recovering from the sinus infection that drained the life out of me with that impacted sinuses business. I binged on netflix and colored. My feeling of accomplishing is there for small things including keeping on here as much as I can.
My caregiver friend and I have exchanged family stories girl confidences and life stories with goal dissappointments and brag moments. I have been authentic transparent real waiting to see if I am accepted or maybe rejected. It has been a while since I made friends. And she is from the outside real world Normal. I envy her reality yet crave looking in her world or enjoying her company laughing over stories. We are our stories. We have a gift to share them with others get feedback. of course feel precious valued now just for existing just today. just today. that is all there is.NoW. But NoW is a combination of past. All those Me's intertwined. I tell about clothes I have had now long gone. That is part of my survivor's tale. Kinda shallow one may say yet Recall those sisterhood of the traveling pants stories. my jeans never changed hands but they went out in the world on me to adventures that are mine. And that interview suit that sometimes worked out good. My around the house things. My clothes are part of my memory story even if they are now passed around recycled in second hand shops until joining a landfill. Those date night things bride to be or bride that was then mom to be and now woman that was. Now I have Here Clothes. We have a Cozy sweater or New scarf that brags our style or color or gift from or past life. Maybe a now thing. For me I have a wide brimmed hat like one I found in glamour magazine then found in summer resort destination shop suprisingly not over priced and perfect for my vestibular problem riddled life...
Lets talk that now. My floppy tan bisquit bigbigbig brimmed hat along with any scarf to nuzzle into or block out the world around me enables me to visit the real world life I cannot rside in fully present functioning. I get dizzy light headed spinning rolling nauseaus paining feelings when lights seem to bright or patterns on rugs are there or store shelves close in or driving gets me in quick moving scenes or people zoom around me or any sensory stuff I encounter and crave becomes too too and then too much. Can any Normal imagine? I explain this to my new friend the caregiver who has not taken care of someone with vestibular stuff. She looks empathetic yet confused. I explain I am like autistic with visual problems touch pain and phobia and a need to escape alone to darkened room alone quiet with my movie place I can toddle around in Yet I want to visit malls and the beach bathed in bright lights places filled with strangers to watch and meet.
Hello world of me in it as seen through my caregiver friend. She sat next to me with her Lady an owner of successful Theater downtown in my city. I am in awe that I am at the same nursing home even with this celebrity. And dine at her table by her invitation. She is outspoken in her quiet voice my caregiver friend warns. I look at this woman who carries herself with beauty and I think oh brother! In fact she comments that her caregivers could fix my hair for me or that my hair looks nice on any given day. She once mentioned to my caregiver friend in front of me that if I knew what a difference some make up applied on me made then I would never be without it! I assured her I knew mascara makes my lashes reappear and lip gloss highlights my mouth that fades into my washed out coloring that baked eye shadow and or light bronzer fixes me up. My celebrity friend is always in make up and a comfy shawl with a piece of jewelery and styled hair even in her 90s. I google her. Her slight dementia has not robbed her of grace and charm but she is confused and wants to thank the owner of the cafe we sit enjoying a meal. And a compliment on my appearance makes my heart sing. When she told me to sit down with her despite the musician of the day telling me she wants to dine alone with him...well I felt belonging. I sat up straighter. I was thinking of every manner I ever learned and I did not tell that performer the real reason he had not met me before is that I close my door on his visit days. Or that caregiver friend and I marvel and giggle over her question to me is he good enuf to be professional? But I also feel surreal. Am I sitting at their table here in the sme dining room where those men said to me get off of our table reserved for us. Remember my posting of that? Then see me at the side of a powerful beauty remembered for building a theater up theatrical empire matriarch of huge family on stage and in her multiple mansions. Her stories from a mind riddled with some soft dementia both inspire and delight. I nobody ugly duckling never assigned to sit at her table by the staff here yet I am personally invited by warm blue eyes and pretty smile that never would lay eyes on me In our respective in real life orbiting circles. Even now no one notices she accepts me advises me offers assistance to me and even compliments me and says she wore a platinum rose bloom ring like mine. I admit to her mine is stainless steel bought from Amazon. And it does not matter.
So today both my celebrity friend and caregiver friend sat at the table. Hey this is My Table and the cna my friend was serving and said pam you get the first plate. well I was sitting right next to kitchen.
So caregiver friend asked me to do her make up sometime. imagine she wants me to teach her tricks when she doe Lady make up. wow.my daughter taught me latest. oh well remember the 80s 90s and then all the looks. I loved theater dance make up kids did I did. fun. now I lazy. fight psoriasis face so when Lady complimented my complexion I immediately thought of the bag full of medicated face creams. Now hidden here I finally have my skin great. funny. I said I see one eye at a time so if one is closed when I do make up do not worry. But we want to feel pretty even to last minute right on.
All distractions yet bonding sharing loving.
food and make up brings us together even in a nursing home no matter where we are from.
Monday (March 6) was the 20th anniversary of my brainstem cerebral hemorrhage. It is sometimes hard to believe it was 20 years ago. I am 66, so it is a significant part of my life. I have come a really long ways since 1997.
Like many, there were no stroke risk factors in my history. The doctors did some testing, but finally declared the reason for the hemorrhage was not known. That was reassuring and scary at the same time. It is my understanding that if you have a brainstem stroke the chances of dying within a month are 90%. Needless to same I am very glad I beat the odds.
We had part of our privacy (one wall) replaced this week. A section had blown down. They now make privacy fences with metal posts covered in wood. That way they do not rot. A few years ago our neighbors on that side (not the house which just sold) had a party and people were leaning against our fence. Not a good thing. I wish these folk would move!
Next Friday is St Patrick’s Day. My sister insists we have corn beef and cabbage. As far as I know we have no Irish ancestry. I did suggest that we wait until next week to actually buy the corn beef. Friday is our usual grocery shopping day.
Hope all is going well with you. Spring in almost here (in the northern hemisphere!)
It's been a while since I've blogged, so thought it was time to get caught up here. I've been sick off and on since returning home from the trip to meet Sue. Though the trip was nice and it was great to finally meet up in person, I think being away so long (6 days total), and the change of food, water and sleeping patterns messed me up inside. It took me a couple of weeks to feel somewhat back to normal again, and then Gary got sick. He has been going gradually downhill since the loss of our youngest son last summer.
Gary's swallowing issues seem to be getting worse lately. I think it has more to do with his not caring enough to concentrate on what he's doing when eating, more depression and less cognition. Several years after his brainstem stroke, we had a physician prescribe a patch that we put behind his ear to help reduce the amount of saliva since he couldn't remember to swallow often and was constantly drooling (Transderm Scop). He wore those patches for nearly six months, and eventually began to remember to swallow more often, or had to be reminded to swallow less often. I hadn't thought about them in years until the night before last when he was having so much trouble with choking and hacking up tons of saliva. It all started around dinner time and him not paying attention when eating. He was getting stubborn when I'd remind him to keep his chin down while chewing and swallowing, and it seemed the more agitated he became with my nagging, the less he cooperated. By the time he went to bed that night, he had probably aspirated enough food to fill a lung, and he began trying to cough one up. I wanted him to sleep in the recliner, but he was refusing. I tried to explain to him that it would be easier to breathe if he wasn't laying flat, but he didn't care. I was so frustrated, I wanted to call an ambulance and have him go to the ER in the hopes they could help him, and maybe he would listen to someone other than me. He refused!! I replaced towels under his head a half dozen times during the night as they filled up with slobber and mucus, I rubbed his chest down with Vicks, and kept the humidifier and the air purifier running in the bedroom. It wasn't until around 4 a.m. I remembered I had seen one of those patches in a medicine cabinet, and decided to try it to help reduce the amount of saliva he was choking on. I actually found about a half dozen of them left over from nearly ten years ago when he was using them regularly. I know you're supposed to toss out prescriptions after a certain amount of time, but this was a patch and I had nothing to lose at this point. I put one behind his right ear, and sure enough within a few hours, he was breathing easier, choking less and finally sleeping after having kept me up most of the night with his coughing, choking and gurgling.
Gary ended up sleeping in until around noon yesterday after finally breathing a bit easier, and I managed to get the rest of our taxes together to meet with the tax man when he came around 11 a.m. in the morning. I did try to nap in the afternoon when he went down for his nap, but got only an hour before the neighbor's son came roaring up in his Harley and woke me. I did, however, manage to get a good five hours of sleep last night, so should be caught up on my rest. I put another patch behind Gary's ear last night to make sure he could sleep without a lot of choking and gurgling and it worked. I have a few more left, and made a note to contact his Dr. to see if we can get a new prescription for more before I run out of them. The only side affect noted for using them is drowsiness, and in his case that would be a good thing.
I'm so happy to report my wife is better walking, sleeping, and being herself again.... God is good all the time!!!!! So all I can think of is take her to some place she loves and enjoys being there..... She even got up this morning and went to early morning Glory service at church driving herself in my car of course........
That place will be the Casino since they have already sent me an email for two free nights at the Hotel...... She was cleared by her doctor this week and all the gear she was using was turned in so she can wear regular clothes and shoes again and return to work full time.... God Is Good All The Time!!!!
I send my Thanks for All Your Prayers and Best Wishes they were all good, thank you all!!!!!
Thank You, Thank You.......
Well tomorrow is the day that I only consume liquid. I have Tuesday I have a surgery that will change my life for the better. Then why am I scared? I’ll tell you:
I explained it to my mother that I feel like a drug addict that is facing life after rehab. The fear of the unknown. It is a common fear with this according to other candidates for the surgery. So I’m not crazy? I often say to myself; ‘I love my pizza and pasta and goodies’, and then I feel trepidation with my decision. Crazy right? Well no. The same fear I’m feeling is the same after my stroke. ‘I love riding my bike and walking in heels’ was what I would often say and still to this day I feel less of a woman for heels, well in my mind, made a woman sexy…attractive to men. That kind of feeling is the same that I first thought about myself after my stroke I mean who would ever want me? I was married at the time and we were mainly best friends, to no fault of his, for I forgot the first nine years of our marriage. Sure, we could have rebuilt it but before the stroke there were problems in our marriage. Despite that, he stood my myside for five years after the stroke and he is still one of my best friends. In that time I was able to relearn many daily functions of life but I still don’t feel attractive enough to attract a man. (Not that I’m looking now)
It’s thoughts like that and advice from people that made my decision to get back into shape. The surgery will allow that to happen. This is the last course of action I wanted to take but the invisible aspects of my stroke make that nearly impossible. But little by little I’m trying to correct my health by taking these steps.
Now, I started this out by likening this surgery as a drug addict. Food was my drug. Comfort was my drug. It was also my antidepressant throughout my recovery from stroke. Now I have to adjust to the changes, which frankly aren’t that different from when I was workout I was doing before the stroke. Yes, my food size will GREATLY decrease. I was, before my stroke, riding my mountain bike twenty miles a day was nothing but, that also allowed me to eat almost anything. And I did.
I’m stronger than this and I know that I can overcome this challenge for if I overcame my stroke to life again I got this too. Bring it on Tuesday!!
So today was a surfing day. The one last month got called off because a whale carcass had washed up on a beach a bit close to where the event was scheduled, and the authoraties were being nutty about possible sharks. OK so the risk of a larger shark being in the area was increased but REALLY it had gone from minimal to minimal + a tiny bit. However the local papers were being stupid about it so they cancelled our day. Not because the risk was significant but because the publicity if something went wrong would have stopped it forever. When will people accept that sharks are a part of being in the sea and mostly they prefer to leave people alone?
Today we were at a beach further down the coast. So I had a 2.5 hour drive there and back. And right now I'm stuffed! It was a magic day though. I had 2 times on the board, with 4 rides in each set. We had perfect weather for it. air temp about 28, with a light breeze, sunny but not too bright sand comfortably warm. water temp about 15.
So 8 "surfs" a little walk on a beach and 5 hours in the car has exhausted me but I'm happy exhausted and I don't really care.
For 5 of my 8 rides I was on my knees, for the others I was lying on my stomach. For someone like me I get on the board facing shore in knee deep water and then the crew carry/push me out to the break, then a pilot gets on the back and does the kicking/steering and the support crew form a funnel back to the beach and stand by in case they are needed. I got a serious amount of water up my nose on a few ocassions as we were backing out. And I fell off in the shallows twice at the end of a run, and had to be hauled back to my feet, but there's nothing like the joy of being in the sea, especially when I know that there are plenty of people about to not let me drown. The volunteers are amazing.
The surf day is organised by the Disabled Surfers Association and anyone with any sort of disability is encouraged to come along and get wet. They have volunteers to help you with changing in and out of wetsuits and they have mermaid tail suits for people who can't walk or easily get in or out of a normal wetsuit. They have beach wheelchairs and portable hoists etc. For those of us who are more mobile the volunteers help you across the sand and even though I go without a carer it doesn't matter.
The surf boards they use are ultra big soft learner boards about 3 meters long and not quite a meter wide.For people who need it they use water beanbags to prop them up. The surfers are all ages and so are the volunteers. They must have put at least 150 disabled people onto the water over the 5 hours that the session runs. and there would have to be about 20 volunteers for each surfer. So it's a huge exercise to run it. They do it 3-4 times each summer so hopefully I can do it again next month.
I was supposed to be going out to a film with Mum and Dad tonight but once I got home I rang them and cancelled. Maybe I'm finally learning to pace myself a little. Don't count on it though
Time flies...having fun or not. William is still not able to walk on his own. We do make it to the pool about 4 times a week. I have decreased our workout time to 30 minutes. We used to do an hour. That is about all that we do.
Our day goes as follows:
William gets up around 6 am and Wa Him to the recliner. He takes his morning meds and has something to drink. I get him back to bed and I get to the YMCA and start my morning routine. I usually do laps for 30 minutes and then take a water class. I do a yoga class or weights or a cardio machine. I usually have 3-4 hours at the gym.
I make it home and get breakfast for William. I next take the dogs out for a walk. We usually get to the park and walk for an hour.
Now it is noon or 1 pm. I take William to a different YMCA that has a therapeutic pool. We will get home in an hour or so. I usually buy a subway sandwich for William on the way home. He is usually hungry.
By the time we reach home 30 minute drive...William is ready for a nap.
I do the laundry and walk the dogs. The usual clean the house and cook and shop.
I take William to the Ymcas monthly luncheon. I have stopped going out to eat since I have retired. I have more time to cook.
I have my weekly ladies bible study and monthly luncheon with friends.
I have not been taking William to church since he has gotten more confused. I watch church on Tv.
I got rid of cable and have an indoor antennae that works well. William likes to watch Patton over and over again.
We are used to our new routine.
I enjoy my free time at the gym. I have not missed work. My day is filled up.
My youngest daughter is moving into an apartment she sent me a text asked me if in my travels I could keep an eye out for the table for her cheap something like $20 I know what that means she wants me to hit the second hand stores to see if I can find a table for her and of course purchases it also with the 9 or 10 second hand stores in and around the area traveling by bus it would take me a solid two days to go to all of them get there and then wait for the next bus. if she made a similar request three and a half years ago I probably would have taken the afternoon off and drove around to each the to see if I could find something for her alas I travel by bus so that's really not an option I'd do anything for her but I don't have two days to spend running around on the off chance of finding a table that might work
kids gotta love them.
be blessed and be a blessing make a difference everyday
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Its been a long time since I wrote. Life seemed to be just too busy to sit down and write thoughts and feelings. A lot has happened since I wrote last year. I just went back and read my last blog in March of 2015. A lot has happened and a lot has not changed. Raymonds condition has gotten worse in a way, but his life style is pretty much the same. We stopped acupuncture once it stopped working. His yearly therapy money ran out for a while and we got through the summer, which was hard in a way. He wanted to do things outside that his body couldn't do so I had to do them. He would be angry if things didn't get done, so I did them. I am not a man, but I did a lot of mans work. Until I couldn't and I hired a lawn service which is wonderful. We have five acres and the service takes care of our lawns, our trees, our gardens etc. The fee is not as unreasonable as Raymond thinks, but he doesn't like to spend money. But we now have a yard service. Many people have asked, why don't you move. Raymond loves all of his barns, shops etc. He has many buildings full of his "treasures" including three Corvairs which have been restored for the grandchildren. Even though they are just 8,10 and 12. All of the "things" that hang out in all of his buildings are his soul, so getting rid of anything or moving is out of the question. He cant have a normal life anymore, so I won't take his love of his treasures away from him.
Because he has fallen so many times and because walking has become a huge problem we are in the process of getting him a power chair. It takes a long time to get one through medicare, but hopefully in another month he will be able to get around easier. I have to hold onto him at all times when he walks.
One great thing that has happened to me is I can now "sleep". They found out that I have sleep apnea and I do sleep now with my Cpap machine. Best thing ever! Getting 6-8 hours of continual sleep is a miracle.
Raymond still sleeps most of the time, other than when we have appointments, and I have given up on trying to get him to move more. My sister-in-law said something this morning that never occurred to me. Sleeping is an escape and I never thought of it that way. He still thinks either a doctor or a therapist will "Fix" him and I cant convince him otherwise, so I just let him think that. He thinks someday he will just be better. Is that common?
Well that is pretty much it for me now. I hope this wasn't too long. I hope I can come back to you all and share. Hugs, Judy
It has been some time since I have done anything here. I told myself that I just need to post and stop thinking about it. I am happy to see another year. Holiday time was hard with my brother gone but I look forward to healing more this year. I have tried to keep myself busy so I just won't get bored and dwell on his death. I don't want to get into another seasonal depression. I want and choose to be happy. His death still hurts but I am still making peace with it.
If all goes well I will finally get to go overseas in April. In fact this year should be a nice travel year for me. I like being to be go out and seeing different things,places. It helps me to cope with life.
I also am on a plan to cut some of my doctors down and not add another once one has been cut. I see so many specialist like everyone else. I am young, but they are hard to keep to up with. I'm also tired of telling my story. I feel like writing it down and say here, this is my story and little about everything you need to do.
I'm also looking forward to Spring. It hasn't snowed here thank goodness, but it's cold. I hate the cold because the CPS really starts acting up on my left side.
I hope everyone is well and hopefully I will not be a stranger again. This place has helped me a lot the past to two yeas after my strokes.
I will attempt to catch people up on what's been happening on our end. I had been having a really good roll on organizing last fall, until I got extremely sick on Sept 29, and stayed that way for 6 weeks. My progress stopped, and I was only able to do the minimum for Bob, and crash again.
I sat in front of my computer, wondering how I was going to be able to buy the groceries.. I could barely function! Then I saw this add on the side of the page about Walmart having grocery pickup now. ? I discovered that I could go online at my local site for Walmart and order groceries, drive over there to a side door, and they'd hall them out and sling them into my car, and I'd sign their phone thing and leave! Now I don't know if YOUR Walmart is doing it yet, but in some areas, different grocery stores are doing it, so call around. This saved me so much time and energy, it literaly made it possible for me to go on!
At 6 weeks I went to the doctor, with no symptoms, except I felt like I was dying, and we talked about the ins and outs of it, and decided to try anti-biotics. Within a few hours, I began to feel them working! They did get rid of whatever bug was hiding inside me, and around the beginning of Dec, I was able to get the living room ready for Christmas. I got the tree up and all the decorations & pictures changed. I was thinking that I could STILL accomplish a lot of the organizing of the mess going on here before son & wife came for Christmas visit. Then the call came that stopped all my progress again. Rather than give a blow by blow description of it all, I will share this facebook post I made that summed it up nicely, after it was over:
Let it be known, that as of 4pm, Tues, Dec 27, Sanderella washed the last cinders of fire smoke from her person, and threw in the towel on the burned lockers. I got the call about the locker fire (two 10 x 30 units, Dec 14, and worked Wed, Thurs Fri, Sat & Sun alone, pulling away burnt frozen boxes off the contents(wet from fire hose) and re-boxing into fresh boxes, what weren't burned to a crisp or melted. On Monday, son & wife arrived for Christmas(ha, ha) and worked like robots Mon, Tues, Wed, & Thurs, while I worked at old lady speed, sometimes reaching regular human speed. I can not believe the energy they had in moving and organizing things into the new locker. They went home early Friday and Bob's friend Fred (thanks again, Fred) helped me move more on Fri 23 and Mon 26, taking Sat & Sun off for the holidays, and collapse recovery(!) So, as I said, Fred & I were there yesterday, and today I went back alone for 2 more hours of sorting thru the things being left, and, after 13 days of being covered with suet from charred, wet boxes/things, it is finally a DONE DEAL - no more trips needed at the burnt out location - PRAISE GOD!!
~~~end of quote~~~~
It's funny that I had bought the locker on Dec 2, thinking to try to move the 2 10x30 unit contents into, so much closer to home, where I'd actuallly be able to pick up a box and work on it. I now realize that it was complete insanity to think that I could have EVER gotten it moved, and what seemed like the worst possible time to happen (Christmas) was actually the only time that I would have had their help. It was a wonderful blessing and a sad loss - not the lockers... but that we don't get to see them but usually once a year, and while us 3 were working so hard, Bob was totally discluded from seeing them and having shared memories to collect. It broke my heart to think of him being so discluded from their visit, home in his wheelchair alone, but he said, "no, this has to get done, and they are here to help you get it finished!" Since the new locker is close, everytime we brought another load, I was able to swing by and check on him.
My tree is still up. Another year, not the first, that I felt like I basically missed Christmas... so the tree is still up. We are usually in the tv room, but the tree is in the living room. Tonight I turned on the tree, and made a fire, and read to Bob. He has this complete set of the Civil War. He told me to go ahead and get rid of them a couple of years ago, and I thought about it. But one night I pulled one off the shelf "A Soldier's Story" and read a little. I thought that even though he can't read all these many words himself, he knows the history, so he won't have to hold on to every word by scratch, I can read the words for him and he will know most of the history already, just some new input from this soldiers point of view. As I read, I kept glancing at him, and when I'd say a battle or a military person, he'd say, 'yea, yea' - he confirmed he knew it. He keenly listened to the the man's story of joining when he was 18. I felt so blessed, that it was possible that I could sit here in such a cozy atmosphere, and give my husband back those stories he had never had time to read, and now couldn't.
tis the season to be jolly :thumbs up: time towish all of my friends a very merry Christmas to you :santasmiley: its that time to put the decorations :bell: maybe even a little eggnog :ChristmasTree: just a little wish to you :fireplace: a very merry Christmas to all of you and a very happy new year and a very speedy recovery