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This is year 3. I still walk with a 3 wheeler. My vision is still double enough to annoy normal movement.
Most important is I am still in pain.
Having said that though I have made a miraculous recovery from a Lacunar stroke. Usually these improve I was told. All that did was put pressure rather than help. One doctor held up my disability insisting I would fully recover.
But I have come far. I could not even sit up in bed and flopped over unaware I was crooked. I had double vision and the room rolled constantly. I could not write the way I used to. I missed my pretty handwriting but I practiced by journaling.
In time it improved and my lovely signature was familiar again.
The best thing was balance improved so I could use a 3 wheel walker and not need someone to hold a gait belt for me to walk.
Today I can read with my 2 eyes together. I still practice. It is still better with 1 eye and I go to 1 eye. I still never do a novel. I used to read non stop all kinds. Texts, papers, fiction,bios.
What deficits from stroke or from medications.????
Attention, Concentration, Memory, Irritability, Mind Missing, Groggy Foggy, Excessive Sleepiness, Narcolepsy......Talking Slow.
Then the Pain that makes me a FREeeeak.
Do NOt touch my right leg.
No one understands me.
All I needed was the right doctors. They said why do you change doctors so much? I insisted they were wrong dumb insensitive. And then I went to a teaching hospital. Doctors that did research and kept up to date. My weird rash was not from meds it was an aggressive invasive fungal infection that was in my nails, scalp and on my face and shoulders. I could not wear sandals and tank tops. I used make up to cover and even bandaids on my chin. It was a horror. My family thought I did have picking problem even when I denied it. I stopped manicures. I cried. I was so ashamed. Dermatologists said stop picking and suggested anyi depressants. Imagine!!!
I finally went to teaching Dermatologists. I found truth. I see one regularly because it is care not a cure. Pscorisis is fungal too so which was going on? I took anti fungal pill for nearly a whole year to get normal nail, scalp,and skin. I continue to use shampoo, solution, creams to keep my skin clear and soft and most important my scalp is not itching constantly. I was not crazy or picking. The itch was real and the skin ruptures were real. Now I use antifungal products to maitain clear soft healthy skin. There were others like me. And I was prone to it. Heredity plus other things. I was innocent blameless shameless.
The walking better comes from constant therapy and exercises. But I could do better. Pain holds me back. It is barely held in check. After 2 Radifrequency Ablation Spinals, no long lasting improvements but it helps for a couple of monts due to the spinal anesthetic that lasts a while. But I have a pain doctor who speaks my language. I said You know about touch burning my leg??? And other crazy sentences! I was typical? In your world of thalamus and surrounding brain area damage survivors where we talk about pain that is never eased by medication and ultra sensitivity to stimuli, even air hurts, and clothing....I prefer soft or legging pants or shorts. Nothing can rub. No jeans ever.
But now I have tried every opiate group and a cocktail regimine that no other doctors outside the secret circle of CPS physicians understand or condone.
My visits to urgent care or an ER result in my routine disrupted and the docs hardly believe I tolerate or survive the dosages or the meds. They refuse to give my cocktail. I am appalled at this same teaching hospital where my awesome doctors live, that an ER community is so ignorant about CPS. But my attitude has changed. Instead of feeling like an alien drug seeking freak psyco, I shame them for their ignorance, name drop my world renowned neurologists to make their heads spin and degrade their degrees and puny jobs, and insist by screaming earlier than I used to before it is 10++.
Emotionally I have changed. I have accepted that my colleagues and friends have moved on in life and careers while I am frozen in ice now an ice queen of stroke. ok I improve that visual by seeing myself in a long white fake fur standing next to my walker with a silver back pack hanging on it.
And one of those blue eyed Alaskan Dogs no maybe a white wolf next to me. Anyway I appreciate my journey without pity. I envision myself even better than I was before perhaps better than them in the real material world. I am freedom in my restrictions. If you get that then you have gained from loss and isolation.
I am not a wild dog in rage but there is a river of anger that drives purposeful motivation. I can control my emotions because I expressed and deallt with and became master Queen of the deepest most powerful of them. Yet I allow myself vulnerability to cry weep over disappointing stagnations in recovery and lack of power in my life. Therefore I refuse to be bullied and engage in small power plays because those are the deadliest.
But I improved slow and I still want more. I want resources access to therapy so I insisted sought out. I seek still. But I am lonely. For creatures like me. But I am hungry for information, challenge,accomplishment, goals.
I am more open minded. More spiritual. I regained my faith. But more settled. I speak my mind. I despise bossiness and applaud those that recognize we only ask permission for anything from everyone.
I am now more than a mother which defines me forever. I am myself. But I live more alone in a crowded dorm of those cast outside of real life. We are more real in here. None of us fear death in the same way as we did as young clinging to life's moments people we were But we live much more in a moment. It is not just pizza.If you understand then you have grown out of the physical world.
As I recover I may not regain all but maybe that leaves room for other things.
I'm having a rough, emotional morning. A close friend of the family recently had a cardiac event that hospitalized him, and after having an MRI, it was determined that there was evidence of two old strokes. I haven't spoken to him directly, he hasn't any paralysis, and have learned that he seems very confused, can't drive, and his brother couldn't understand him while talking with him on the phone. Apparently he's seeing his PMD this Friday.
I realize that he and his wife are taking care of it in their own way, and that's the way it is, but I'm really scared for him. I think it stems from my own experience; at the same time my level of emotional response seems (to me) inappropriate. Brain short-circuit?
June used to be a happy month for me. It was the real beginning of summer for us, which meant fishing and camping trips, family picnics and working out in the yard and enjoying the sunshine. That all changed after Gary's stroke on June 1, 2004 and even more since the loss of our youngest son, Dan on June 22nd of last year. I no longer look forward to June in the same way I did years ago. This year I want it to go by quickly and do not feel the need to celebrate anything - especially mine or Dan's birthdays on the 30th of June (He was born on my 25th birthday, and died at the young age of 42, just 8 days before our birthdays last summer). I had originally planned to make a trip back to Colorado to place flowers on Dan's gravesite since we hadn't been back since we buried his ashes last July, but with trying to sell our place and get moved into a new home, I don't see that happening this year ....maybe next year if we are settled and can handle the trip.
We are in the process of moving and hope to be in our new home by the end of June. Too many changes here, and with the new flight patterns at the airport and huge planes flying low over our house at night, it's become more difficult than ever for me to get much needed rest. Former Colorado friends, who now live in Arizona, have talked us into moving out closer to them near Casa Grande area - quieter, different county, more rural location and away from the hustle and bustle of the big city. We will be about 15 miles from major shopping in Casa Grande, but also have a Super Walmart and large grocery chain within a couple miles of our new home. The neighborhood is newer homes and several houses less than a block from us are occupied by county deputies, so I feel like it's a safe neighborhood. We will also have a pool in the back yard, so I can start exercising again without killing my knees. I won't have to worry about having someone sit with Gary as the house is small enough I could put him down for a nap in the living room or bedroom with a monitor and still be able to hear him if I'm out back swimming, only a minute away from the back door. I can add to the already nice landscaping in the back yard, and make it a resort-like escape when I need a break, or a swim (which for me would be a great stress reliever). Just praying we don't run into any complications before closing and that this place sells soon so I don't have to hire someone to maintain it after we move. I'll post a few pictures after the move.
Each week I do certain things, visit my old ladies, catch up with friends over coffee, do some housework, some gardening, maybe have some time reading in the sun. Officially I have days off from the church work Monday and Wednesday but that really is a fallacy. We are trying to set up a lunch group on Fridays to follow the Coffee Morning, a soup and a roll lunch for some of our church people but also people who come to us for welfare. So three Wednesdays in a row I have attended one of those meetings. Of course there is a roster and looks like my name was all over it...sigh. But then it is an outreach program to our community and I can see the benefits of those. The community around the church neighbourhood is a working class community but many are poorly paid and in the position of paying off a house or paying rent so their level of income often leaves a short fall as far as buying food goes, so we do a food handout on Fridays. A bag of food which is probably enough just to tide a family over for the weekend, nothing more.
It has got me thinking about the significance of food in our lives. When I was doing my Lifeline training (Lifeline is a Suicide Counselling Service) as a telephone counselor as part of the training course we had to describe ourselves in various ways. What would you be if you were a flower, or a dog or a house. That sort of thing. Our answers and descriptions told the trainers a lot about how we saw ourselves. It seemed odd at the time but the 80s were like that, we were supposed to be conscious of how we appeared to others. I was thinking about that today as I talked to a friend who asked: “How do you see yourself now?” I think I mumbled something about being a senior citizen, a widow, a church worker etc. If I had to write down now what I would describe myself as as a food I would have to toss up between a fruit salad and an Irish stew.
Why am I a fruit salad? Because a fruit salad is a mixture of fruits, sweet and sour, fresh and bright and nourishing. My life is like that sometimes, a bit of everything but hopefully nurturing and refreshing and bringing something enjoyable into people's lives. Instead of sugar and spice and all things nice I think we do need a bit of tartness in our lives too, the zing of lemon and the lingering aftertaste of passion fruit, and I can be both of those. I guess because I am English as well as Australian I am polite and people pleasing but also truthful and honest and that can be seen as sharp sometimes, like that touch of lemon you find as a contrast to the sweetness of strawberries and peaches. Anyway that is why I think I am like a fruit salad.
I did a bit of pastoral counselling this afternoon. I met an old couple from church ( he is also in my Lions Club) and she is going through a bad patch with many small ills that the doctor's say are beyond anything they can do something about. She is very depressed about the way that is impacting on her life. I guess it is a build up of many small breakdowns of bodily organs, illnesses she has been able to overcome before but her body is not coping now. She was almost in tears as she told me about them. I hate to see my good older friends deteriorate but it is inevitable. This lady has given a lot to the community through one of our leading Women's organisations and it is sad she can no longer contribute in the way she had previously. She is helping to run a convention for the organisation locally and says she is overtiring herself. Of course I do see myself in that situation in the future. At the end of our chat she told me how glad she was that we had met today.
Why do i think I am like an Irish stew? Well an Irish stew is what my mother would serve up in the days when we were poor. We were poor because we came to Australia from England with very little, were paying off a block of land and trying to build a house on it at the same time. Dad had some savings and with that he built the house to lock up stage so we moved into a house without internal walls, just sheets spread around for privacy. Mum grew vegetables and Dad worked and they bought cheap cuts of meat and a sack of locally grown potatoes and with those two as the main ingredients Mum made an Irish stew. It was warm and nourishing and filled us up. Of course my ancestors were Irish on my Dad's side so I guess we loved that traditional Irish dish. It was something that reminded Dad of his own childhood. I think those connections are what made me as I am, all the people who influenced me for the sake of good over many generations. So I relate to the Irish stew as being an ancestral dish and a part of my heritage.
Ray was a meat and potato person too for some of the same reasons but he had a step father who was a fisherman so he was definitely fish and mashed potatoes. He also worked in the Fish Market as a Fisheries Inspector so he was a good fish cook as the Inspectors at the Fish Markets would cook their lunch in a small kitchenette and teach each other new recipes. Funny how you think of things like that sometimes. He actually taught me to cook fish in a lot of different ways, and make gourmet meals of calamari and lobster and crabs which he bought when they were cheap at the Markets. Being on my own I hardly cook these days but fish and a sauce is easy to prepare so still features in my weekly diet. I loved oysters and his last district was an oyster district so got my fill of them there. Ray often took me with him when visiting oyster farmers and I would "taste" their oysters and hazard a guess at where they came from. I was pretty accurate (well I knew where they had leases) and got a reputation as somewhat of an expert. So maybe I am a bit like oyster soup too.
Sometimes it helps to sit down and think of who we are, what our purpose is in life is at this stage of our lives and whether we think we are using what we have in the right way. I know here there are many calls about charity, I get my share of those, and I would love to give money to every charity that rings me but I can't. Through Lions I help to raise money with our BBQs and Christmas Stocking and other fund raisers. In my church I help out in many ways. With my other commitments I do the same, not always as much as I would like to do but what I can. I know as I age I will not be able to do all I do now, talking to my old friend today was a warning to me. I know some who read this will be mourning the life that was, the skills they have lost and be wondering what they can do now. I want to say a smile can make a difference to someone's day and a kind word can ease someone's pain and if that is all I can do later on in my life it will have to be enough.
As you all are aware I enjoy spiritual reading & agree with bhagwad geeta, buddha, jesus philosophy. give myself pep-talk every time I feel like giving up on anything in life. my biggest one is, "choices I make today will create my destiny." & my choices every day is dependent on what brings me satisfaction. & doing things right for my family does make me feel happy. If I get immediate thanks or appreciation it makes me feel good right away. but I have learn that some jobs like raising your child right seeing them successful & happy won't happen overnight. I will see results later in my life. so doing right things today for my family matters today. like I keep on telling our son if you want anything in life give your all as if, if there is no alternative. once done your job right then don't be attached to results. whatever is the outcome accept it realizing god has made better plans for your life. I believe in this wholeheartedly. seen in my own life with my stroke & how my life has unfolded after it. Everything that has happened in my life including stroke is for my own growth. life has become so meaningful & great again.
Some people would assume at times I share a lot of the traits as someone who is Bipolar for I tend to be riding on a roller coaster of emotions. I don’t have the extreme changes in my personality like deep lows that keep me in bed and I don’t want to assume I know those feelings but I know I’m not nor ever have been. My issues may appear like depression when in fact they are exhaustion. Mental exhaustion. On a regular-season basis I have days in which I wake up, meaning I open my eyes, around 7-9 am and I feel like I have 200lbs of weight keeping me down in bed.
I may be “awake” but my mind isn’t quite ready to conquer the day and I lay in bed watching Hulu or Netflix on my tablet. I’m not hungry or thirsty and can go until Noon or 1:00pm before I even have the energy to move. Yeah, I may get up to use the bathroom but that’s a far as I can go. I can’t even begin to tell you, how many people have accused me of having depression. “Get out of bed and just try” or “You should just go out more”. Yes I agree but I can’t even begin to explain I’m not depressed. I may be sad a times but in no way am I depressed so all the positivity needed to break that cycle won’t work on me. My brain in COMPLETELY EXHAUSTED.
I can’t imagine what someone with depression must be going through. I am not trying to equate my issues with what someone with true mental de-stress must feel all I can I talk about is my situation. Sure I was depressed or very upset in the beginning of my recovery. I always tries to see the light at the end of the tunnel. I found that easier for most of my past memories were lost so all I had to gauge my life as what it is now. SO I found myself not being able to do things so I knew I had to work hard to re gain as much as I can. Most people are burdened with the memories of their past life. I couldn’t imagine…. Really!
So please, just because I may not have the energy to get out of bed and do something doesn’t mean I don’t want be active or spend time with you. I don’t have the energy to adult.
I often relay a fantastic story I read called “The Spoon Theory”
In part it explains how things you may do every day takes someone with a brain injury (this story was about Lupus) and incredible amount of energy to just function in daily life. I have no claim to this story but it is a great explanation of our levels of life that can change daily. I could wake up in the morning and by the afternoon, I may not be able to think straight or talk clearly.
“I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.”
She wrote that explanation for everyone..
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I have been Dans caregiver for 6 years . 4 at home with me and the last 2 in the nursing home. ARGGGHHHHH .... I try and I try.. but his brain injury is just to profound and the OCD seems to get worse daily. His life is so limited. Because of himself - of course the stroke is the real culprit. But the daily manipulations continue. Yesterday I pick him up from the nursing home, take for lunch at Mc Donalds --#8 coke with no ice..... barf... but it is his choice every day, and I know why. It is always the same every day - no changes - no surprises. But anyhow I get him his food and had planned to have him come to my work and hang out. We didn't have clients scheduled just a lot of research ( I work for an ATTY) its a private business so I can do those things. I and Dan are blessed in that aspect. So at least once a week he does that. This week he was gonna get 2 trips to the office. Well I was driving and I rubbed the curb with the car tire. And he just had to go ballistic, -- I am so tired of it, tired of my own - ( oh my god--opps, *beep*, hit that curb) But his reaction the LOUD yell and the look of contempt, and barrage of name calling....... he can't tell me the color of his underwear, but he sure can tell me off. I care why, I mean this has played out in 100's of ways - 100's of times. But it breaks me everytime. This time I took him back to the nursing home . and left...... Of course that afternoon later my sister MY sister had mad a date with him to go to the movies .... Notice I said MY sister -- ( DAN has 6 siblings , haven't seen any or his mother in 3 years ) Damn thats a awesome family- right-. Again I look for something that is not there . I expect kindness from a man who is void of it. But my sister even though she is devastated for me, followed through and he got his movie date. But I don't want to see him for awhile. I don't want to punish him, he can't even remember what transpired. But my heart, broken so many times. The kids - are taking him to church tonight and out to eat.
The kids feel they do a lot and they do, with dan. But of course its not daily. its once a week for them, for me it is 2x day , most days. For the kids lucky enough to move away from this crap. it is a couple times a year. They will breeze in give suggestions and just don't get my resentfulness. I love him, (DAN) I Love my kids, I love my sister - whose main goal is to just keep me sane.... lol --- I am just venting.... Its all about me right ------- at least on my little blog--- on my little island, I come to, called stroke net.
ECT --- works . ( electro convulsive therapy ) Yes the "barbaric" "one flew over the cuckoos nest" - Zap the brain.. Works. Old timers know about my battle with depression after caregiving proved to much for me. But taking care of Dan is proving challenging for the nursing home as well. He is frusterating. For even the most seasoned medical Pros. I get a bit of satisfaction knowing that. I did 4 years, the nursing home just completed their second. It is so nice to not wake instantly ( if i would get sleep) with a panic attack- that just lasted 24/7. So fellow caregivers with unresolved depression there is hope. Of course as with all things medical - it is not a one size fits all. It may or may not work for you. And during the treatment - you are existing. thats it. But I knew from the very first treatment that this was by far the most positive reaction - I had felt since the long list of methods, medication, supplements, homeopathic cures, hospitalization.
People I met during my depression are just now meeting "me". LOL Anyone can message me if my experience is in the least bit helpful.
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I believe I posted that 3 weeks ago I had foot surgery too much walking since the stroke that's my little joke anyways last week I would had an appoint with my podiatrist and I was healing up pretty good but he had to do a little flushing in manipulation of the incision and I jumped you said are you okay I said listen. Considering 3 years ago if you'd done that to me I would have been able to feel it I don't mind the pain.
It is all about attitude and perspective isn't it?
Be blessed and be a blessing
Lesley's mum is now here and settling into life in North East Tennessee. She handled the long flight from New Zealand to Los Angles very well. She and Lesley spent 5 days there resting and spending time with relatives. A 5 hour flight here and all is now going very well. The paperwork and medical exam are in the hands of the immigration lawyer and mum's health is good. She has a nanny nap once or twice a day and awakes bright and cheerful
What a joy it is to have her with us at this time in her life! Lesley has been taking her all over the local shops and we have been spoiling her every day. We spent last weekend in Atlanta with some relatives and she was the center of attention. Lesley and mum are sharing many special mother/daughter hours together everyday. I rather stay out of the way and do as I am told. I have never eaten better!
Before she arrived I put a short hand rail by the only two steps in our house and they have worked out well. It is all she needs to get up and down them without assistance. We just hover nearby. This week I will be putting the seat lift in the motorhome so she will not have to deal with stairs getting in and out of it. She is excited and cannot wait for us to get on the road again soon. We plan to be traveling in late June for a month or so, depending how she handles it.
the dogs have become very protective of her and are always nearby.
well, I must go now, just a quick update here.
It is been a while since I have blogged.
I haven't been able to be alone for a very long time. This weekend I have been. No one here. It is nice, not only the freedom of it, but the fact I can do it. For so long being at home alone was something I just made sure never happened. Not on a conscience level, but sub consciencely. I have a little anxiety this morning, but thats only because i have "thought " about it.
Dan is doing as well as Dan can do. Good days, Bad days the same cycle repeats itself. Trying hard to just hang on and enjoy the good and walk away from the bad. But on average I leave the nursing home - which i visit usually x2 daily- crying about 2 days a week. last week was his birthday, baked him a homemade red velvet cake. That cake is a lot of work. The kids took it to him along with his birthday gift. A fluffy "cheatah blanket". I was home sicker than a dog with this darn flu/cold. He was mad it wasn't me, so he kicked the kids out, along with the cake and his present. Mind you earlier he had ny sister come to his room and ask to take him to one of my daughters home for his birthday. He refused - i think he thought I would come, I couldn't ,i just ached to much.
I came the next day and he does the dismissive thing flipping his hand in the - go away fashion- the," get out of my sight." I have had that happen to me so much, one would think I would become immune from that distain he displays. But Im not. I still care enough to cry.
I have found I can concentrate much better. At work I am finally a asset instead of a hinderance. It was awful, in the height of my depression- i had no ability to remember, my eyes couldn't see and focus. and my hearing was muffled . My stomach had that awful fight or flight feeling. Those were my primary problems, with a whole host of more minor complaints. You know on Facebook some little saying will come up with a clever way of saying, all that has happened to me has made me stronger. I say thats a lot of B**lSh*t. If it ( depression) didn't kill you, your just damn lucky. Luckier still if you can find a treatment that works. Well thats my brilliance , haha for today....
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.
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!
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.
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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