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  • 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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  • swilkinson

    Living on angel time.

    By swilkinson

    I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing  the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I was a little bit shocked by the news but taking into consideration I have had the melanoma op, the lymph node dissection etc I am not really a good candidate for another operation, especially brain surgery.   The specialist was fairly brutal because I think  he wanted me to know if I wanted an operation it had to be after I got a clearance from the melanoma specialist and that would take time. He said he knew I had a long wait ahead of me but not to worry.  Not to worry!!! So back to basics, no stress, no strenuous exercise, no * blush, sounds like no fun at all. So what can I do? As usual make some decisions, live a quiet life, let the future take care of itself, one day at a time. Hell's bells, what else is new?   So I have a plan. I have to just go on the way I always have, going about my usual routine one day at a time. Whenever I start to worry I will visualise that little bubble about the same size as the tiny diamond on my engagement ring. I will visualise a tiny angel sitting alongside the aneurysm, with her thumb firmly on top of it holding it in place. I know one day it may be that she will take her thumb off and the pressure will build up and life as I know is it will be no more. But It will happen to us all one day, in one form or another.   I went to Dissection Clinic down in Sydney today and there have been no changes in the past three months to the Lymphoedema, which is good news. In the interview I told her I had regained my confidence in walking down stairs which had taken a year to do and had recently started yoga again. She seemed pleased with the progress. No more interviews in any of the Sydney specialists rooms until next February. Hurray! I have survived twelve months since the melanoma was removed and six months since the operation to remove the lymph nodes. I have a lot to be thankful for.   My daughter took me to both appointments, I was so glad she had the time. We stopped for lunch today before we left Sydney and although it was expensive it was a happy time and one we rarely enjoy together. She also got the news today that the position she holds as Captain of the Cardiff Corps has been extended for another twelve months which is good news for me. If she had been moved it might have been a lot further away. Her husband's appointment has also been extended. Though he will now have a wider area to cover, which means a lot more time on the road. But she said he can cope with that.   On a less happy note my special friend who has the leukemia has now been in hospital for eight weeks and he now seems to be getting much weaker. I have been a regular visitor and it is painful to see the deterioration. With all the people  I  have ministered to in hospital you would think I would get used to seeing that happen but I never do. I am always an optimist, thinking with the right treatment, an adjustment to their medication etc they will be fine. But that is not always the case. So maybe there is more bad news to come.   There are signs of Spring now, birds building nests, green grass after a little rain, even some blossoms on the prunus trees in the parks we passed today. Hopefully the nights will warm up and we can start packing away the winter clothes. I have no plans, the future is a blank canvas. Don't think there is much fun and excitement ahead but who can tell? If I wake up breathing and moderately energetic I will endeavour to have a good day.    
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sun is always shining & just behind the cloud does not negate the fact that sun is still out there somewhere

Like I have mentioned before, weekend I usually spend in my spiritual learning, Saturday evening usually reserved for learning of our hindu scripture Bhagwad Geeta, whose teachings I find it very relevant for all human beings, & my Sunday mornings I love to spend in Oprah's super soul Sunday series where she brings in guest who can depart great teachings through their book  by sharing their experiences in life. It was surprising these both days teaching were about same thing like Sun is always out there shining which is eternal truth, just because right now it is hiding behind cloud does not mean Sunlight or sun never existed before, its that cloud aka our faulty understanding  which got blocked by cloud needs to disappear to see that eternal truth, that was my own AHA moment, so we need to work towards our understanding to realize what is eternal truth & what is cloud which alters your reality about situation like our ego,anger,jealousy, all those bad vices we all human have, which clouds our reality.  So knowing to identify these clouds & understand the eternal truth is goal of our human experience. I was like wow I get it now, but I am sure I will forget as soon as something won't go according to how I want it to go,   that's why I  keep on gravitating towards this timeless teaching to clear cloud which sometimes  block my vision  about my own life experiences  & experience pain, suffering & other useless emotions.   Asha

HostAsha

HostAsha

 

Temps are Cooler While Life Heats Up!

The temps are cooling off here - instead of triple digits, we're down in the mid-90s during the day but 70s at night.   The water in pool is staying around 75-80 degrees, so most of the time too chilly to swim unless I try mid-day when the sun is really hot.   Can't complain since my friends in ND are dealing with 2-3 ft. of snow right now and much colder weather.   🙂   Trying to find placement for Gary has not worked out well.   All of the suggestions from "A Place for Mom" were for places that either didn't have opening or one that had two older gals who would not have been strong enough to handle him.   He's 6'2" and weighs between 210-225, so a caregiver that is under 5' ft. tall and barely weighs 100 lb. dripping wet would be a problem.  We looked at a memory care facility and at group homes, none of them worked for Gary's needs.   I finally put a call in to Hospice of the Valley to see what options they had available, and they got him signed up for Palliative Care - providing a social worker once a month to assist us with resources.    She put me in touch with local facilities and agencies and I contacted a private home health agency in Casa Grande.   Since our other caregiver, who we've had for nearly 3 years, took off for two weeks and didn't really want to come back, I was without a caregiver for nearly a month.   I had to do something soon.   The new gal came last week Tues. and Thursday and she seems to be good with Gary and caught on to his routine very quickly.     She's sending a different gal this week Tues. but she will be back on Friday, so we'll be getting 6 hours a week at much less than I was paying Carmen (because of paying 2 hours travel time each day).    It's not as much time as I would like, but better than nothing.   They say "when it rains, it pours" and  that expression surely fits the past few months.    Our daughter-in-law was recovering for several months from her initial surgery for cancer, followed by septic shock, failing kidneys, dialysis, etc.   She was finally able to go back to work full-time last week.  I heard this from our Colorado son when he informed me that he had been off work for neurological testing to find out why he couldn't feel his feet and was losing feeling in hands and having trouble focusing.  He had surgery last winter that initially was supposed to help nerves in spine for the problem with his feet, but it turns out the recent testing revealed that he has CIDP - something like Guillain Barre syndrome.   He went through four sessions of infusions this week to see if that would help, but will have a wait and see before trying other options.    He is on short-term disability (from his new job) now but may have to go on long-term disability.  He mentioned that if the treatments didn't work, he may be coming to Phoenix for treatment at the Mayo Clinic.   I had hoped we could get to Colorado before colder weather set in, but found out last week when I got oil change and tires rotated that I needed new tires - which I hadn't anticipated this soon, so trips are out for now.     Some days it feels like life really sucks - other days, I toss up my hands and say "it is what it is" and go on!       Sarah    

SarahR

SarahR

 

I am becoming old person now

I am realizing I am becoming like my mom & old person, while watching all these new Indian movies I can't understand lyrics of songs & getting scandalized by amount of less clothes actors are wearing while dancing to these weird music whose sound is catchy, all pretty people but can't understand a thing they r singing & it is supposed to be Indian language I should understand. I need someone to tell me what did he sing lol. now I can see my  parents reaction when they used to see movies in my college years which was in 90s.  & complain about what the heck they are singing & where is story here. I feel same way now when I watch movies of 2019. So table has turned now I have become that old person lol.  I couldn't resist writing it down here, oh and other front I tripped & fell recently landed on my good leg knee was worried since I was still recovering from my bad foot sprained ankle & now this, luckily icing & ointment I m not hurting & able to walk still thank goodness. life is full of adventure, kido is doing great too  at his college, he loves the college & friends he is making there, so I am one happy mom, he has been learning about anatomy of human body & was all excited about neck & anatomy of human brain, I told him I don't mind donating my brain for kids to learn from, but only condition, they have to be very respectful of my brain & not make any fun of it, while learning about it, hubby goes oh you got o go wow this is amazing brain, this person must be so intelligent just like Albert Einstein  lol.

HostAsha

HostAsha

 

do have something to whine about aww my ankle

I do have happy blissful life, though God don't want me to be cocky so have to throw in some discomforts in my life just to test out  whether I have mastered my own spiritual mambo jumbo or not lol. Anyway I have not, I am still in work in progress, & I have to whine my sorrows & joys all here, on Weekend hubby & I gone out for walking in woods near our home, unfortunately there was big party in park & hubby had to park car in field & somehow I missed hole in the ground & twisted my ankle there, though I as able to catch myself & walk home without any pain, so did not think of much  of it, now today its hurting while even walking to bathroom. So I guess few days of icing & I should be back to normal. or whatever normal is, today I decided to use cane but have you ever walked with cane when you  have access to only one good hand, life becomes so complicated with  no hand   Anyways like I have learned in my all spiritual books I read & ponder about, I should try to see what lessons I am suppose to learn from this incident in my life.  my bhagwad geeta classes are going on good, though lot of time teacher spends in rhyming in difficult indian langauge(sanskrit)which I am not familiar with so goes above my head, but I love the discussion part which comes in when he is trying to explain meaning of each verse, thats where I get my AHAs, though it does go through lot of boring BLAHS  before AHA comes along, but hubby says when you are digging for diamonds in mine you got to go through lot of coal before you find your diamond, that is part of life, this is where I will develop my patience  & not giving up muscle. So I am going to follow advice of my spiritual guru my hubby & stick it out.   Asha  

HostAsha

HostAsha

 

Looking forward to more fun in life

I have started to get back to my old routine again, this has some good and some bad aspects. The good side is more socialising and going out when I want to go out. When I had the carers it was shopping once a week on Wednesday afternoons and coffee or lunch if someone volunteered to take me. I felt isolated and frustrated. Then after I saw the neurosurgery team and got permission to drive I regained my  freedom, now I can go where I want when I want.  The downside is that I am expected by the church folk to be wherever there is a need for pastoral care! And to do all the things I used to do.   I am gradually getting stronger and maintaining my energy levels longer.  This means a whole day out is still not possible but a morning or afternoon for three or four hours is. When the three months is up, when I should have recovered from the anaesthetic etc I should be back to whatever is the new normal for me. If I have been busy in the morning at the moment there is still a time mid afternoon when I need to rest, whether it is in a quiet corner  with my feet up or a short nap. I try not to say "yes" to too many things on the one day now.   I find I have to take signs that I need to slow down from my body seriously. If I only do 20 minutes gardening in the morning that is fine, I can do some more tomorrow or the next day. It is good to be able to do a little more each week. Today was a busy day as I went to two funerals, one in the morning, one in the afternoon about half an hour's drive apart.  Both were Lions wives, I had known them both for many years. Sadly as some of our Lions are in their 80s and 90s this is going to happen more frequently. But as the Lions were some of the people who supported Ray and I through the stroke years they deserve my respect now.   Also on the good side I should soon be able to travel again so I can go up to Trevor in Broken Hill for his birthday and plan some short visits to other friends. Basically this has not been feasible for the past couple of years so it will be another form of freedom gained. I have been wanting to go on holidays so much, envying all my couple friends who post pictures on their Facebook page from all over the globe. I must confess this has been so ever since I became a widow. I did those two trips to England including the trip when I met Ann Rogers at her son's wedding in Norfolk and  of course I had the meet up with Sarah Rademacher in Hawaii. Those trips just whet my appetite for some more travel adventures.    So what can I do? Increase the fun times in my life. Let's face it Mr Right is not coming along in my future, with or without the white charger. So anything I plan to do I need to be able to do alone. This is a bit limiting, dancing needs a partner except at the WAGS Womens Weekend in November and I have just put my name down for that. Then there is the WAGS  Christmas party and I have put my name down for that too. Every year I ask my friends to give me a call if they want me to do anything with them in November or December and each year I explain why I need advanced notice. Every year some are disappointed that the Lions Club Christmas raffle and other things have taken priority over whatever they wanted me to do.   BUT I still have to have the thyroid operation to face up to. I have contacted the specialist's office but have not heard back from him yet about when he plans to do the operation. I am hoping this doesn't mean I will have the operation just before Christmas, that would be a tragedy. I would prefer it after Christmas in that slow period that is most of January, when my friends are looking after the grandkids for the long summer  break. I am not as involved as I used to be when the Adelaide boys are up visiting their mother and need babysitting. These days they would be minding me! They are 13 and 12 and full of energy. I love having them here but strictly one day at a time.   I must say my future looks brighter now. I am still cautious about making plans, maybe that will never change. I still keep to the motto: "life is what happens when you're busy making other plans" but if I relax and go with the flow it can still be a very pleasant life.      

swilkinson

swilkinson

 

trying to find limitless soul within you

I guess I attract towards spiritual teachings of all religions. recently in temple near our home they started discussion & lecture series on  hindu religion's most sacred book Bhagwad Gita which  teaches you how to live limitless in this limited world. It was quite a interesting session, where you meet very similar thinking people and trying to find contentment  and  deeper meaning in your life. Gita's teachings revolves around doing your duties according to roles you are playing in your life mother daughter, friend, wife whatever role you are playing to best of your abilities without any attachment to any results. you just do your duties without getting attached to results or thank you in return, you do it as your offering to God, &  another interesting thing which  we will be discussing in our next classes is  how we human beings are limitless &  not be bounded by this external limits we put on ourselves oh I m not tall enough or pretty enough or smart enough limits but knowing we are enough  & all what we need is all within us will be  our class discussion. So I am looking forward to all these intellectual stimulation for my mind & soul.   Asha    

HostAsha

HostAsha

 

Oh my

I haven’t written for a while. But I had to write this for I am so happy?!?!?! I was sitting on my front yard (a common front yard for I live in a condo) and had my bathing suit top, shorts and on my stomach reading a good book. I was unaware of anything for I was deeply involved in the book. When I got up and re positioned my chair I head a “hello” and I couldn’t see for I as wearing my reading glasses. I took them off and he extended his hand and introduced his self. I can’t remember his first name but we joked for his last name is Kelly and I said it was spelled wrong. He told me that he was looking at a unit to buy, we had some small talk and I explained that I know all the units, in my building, were already occupied. You could tell I wasn’t in to small talk because I was putting my glasses back on. He walked in the parking lot and called the agent and he came back and told me it was 23 not 31. Again… me- oblivious I said “ I hope you find it and have a good day. He asked me if I was single and I said yes and he asked me if I wanted to get drinks.. I told him I don’t drink and he said dinner? I was almost ready to say ‘no thank you’ but WTH I deserve it.. He asked for my cell phone # and was off and I came in.   I’m nervous to make “THE TALK” you know.. Why I am the way I am. This has always been my fear.  But dinner is marriage lol. The real test is if he calls. .   I did day to him. “Hope to see you again” but the way I said it was like I would say at the bank.. Informal politeness. But we’ll see But just asking was all I needed

ksmith

ksmith

two years on

I just recently reached two years since my stroke. I have come quite a way in recovery, but not yet satisfied.I have explored and used many devices, programs, exercises, OT and PT, and all this has contributed to my present state of ability.I often hear"you look great" Or" you are doing well." But people don't see the daily struggle  to do simple life tasks, and  how hard it is to stay motivated to progress. I go to a gym....LA Fitness, every other day, on a regimen.When  I first went a year ago,it was very hard to do any exercise  machine.Now i do all the machines. It helps my strength, attitude and I meet so many people there,it is very motivating. Ive just begun to use my left ( affected) arm to use 4 different machines. I can hold the handle with my hand, sometimes aided at grabbing it with my right . I am pulling a weighted pully across my body both left and right and then up and down.My shoulder has improved, and my elbow gained flexibility. Still, I only use 3 to 5 pounds.I will add weight when I can.What is gratifying is that I can get down on the floor and do stretches.I am able to get down and back up on my own, sometimes painful, but tolerable.It truly helps my back and overall feeling to do this. What ia new is my volunteering as a stroke peer helper at our very large local hospital.This is just beginning, and I have a bit more training to attend, though i have done some already. I am a bit nervous about my mental-emotional stability when I meet someone who is experiencing all the effects, and might have the pseudo-bulbar affect in full swing,I surely don't want to join them in a crying jag. All in all I deal with each day and what it brings,always optimistic and seeking some recovery I might  see, that is too subtle for anyone else to notice. Its great to be alive. I add prayers every day for full recovery and healing. Ive been led to  many thing by listening to people I have met, and showing genuiness and thankfulness.I now do acupuncture once  weekly which came about from a chance meeting.In the past months I had an opportunity to participate in a college clinical trial, and use a Saebo flex glove,as well as try a hyper-baric chamber for a month. .    

alansd

alansd

 

I'm a success

The title is a little ambiguous but I have just been to my 18 month check up for my lymph node dissection and my six week check up for the brain aneurysm clipping and both were determined to have been successfull. The area of the lymphoedema has not increased and is about the same as this time last year and the neurosurgery team is pleased with my mental condition. When I consider I have had three major operations in two years that is a miracle.   I have just started to drive again and it is wonderful. I am so grateful to all the people who have transported me during those six weeks but I hated ringing people up and asking them to take me places. I did get a couple of "too busy" replies and that is inevitable so I wasn't offended. I have made the same reply in the past when I wanted to say "yes" to someone but knew it couldn't be done. I have learned some new routes and on two occasions a trip to the shops resulted in having lunch out as well. Great socially when I consider I could have spent the whole six weeks alone.   I missed out on a few events as they were at night during the first few weeks when I rested most afternoons and would have been too tired to attend but resumed going to Lions this week and I will try to help out with the Lions Club crew at the BBQ at Bunnings on Monday. Tomorrow I will pick up my little old lady and take her to church, she hasn't been for seven weeks so is looking forward to going. I have been picked up the past four weeks for church by a friend who is the organist and am so thankful for that.   My daughter and her family are coming tomorrow for lunch. It is Ray's birthday, he would have been 77. They haven't be here as a family for a while although Shirley has as she took me to the appointments in Sydney last week. I am happy they give me the time they do I know how busy they are. In another four weeks Alice and Trevor will be here for a week. A d I will get to see my two grandsons from Adelaide too. I live for these family encounters now and feel as if I am just filling in time in between. I don't think I will ever get used to being a widow and being on my own.   I often ask myself what this part of my life is all about? I had the three operations to extend my life but there are times when I wonder what the future holds. Today is wildly windy and not good for gardening which is what I had planned. Of course time is easy to fill in, I have been piecing together crocheted squares left over from other projects to make cat mats, used as part of the give aways for rescued cats going to their forever homes The mat is used in their cage and then goes with them to their new home, something familiar to help with the transition.   Soon I will be back working in my usual capacity as a pastoral care person but that is a little further down the track ,I'll start as soon as I am back to feeling energetic again. That will probably be another six weeks or so on. Three months is what it takes to get over the effect of the anaesthetic and the trauma of the brain operation. At least I can drive! That gives me so much more freedom. And there is still the social meetings, coffee  mornings etc to enjoy. I really don't have a lot to complain about, do I?

swilkinson

swilkinson

 

Clouds gathering

Been awhile since I blogged. Things happen. We have been busy, but more on that later. The huge issue for us now is that a very, very good friend of mine of over 30 years has lung cancer. He has finished chemotherapy and radiation. There has been some improvement but not much. I have done a fair amount of research on the subject and did not find much encouragement. I just do not have any other words to say about it at the moment.   on a brighter note, we just celebrated mum,s 97th birthday. She is doing well indeed. Still sharp as a tack mentally. A bit slower physically, but still a great joy to have living with us. I would say that the past 2 1/2 years having her live with us has made them among the best years of my life.   lesley and I went to a wedding of a niece of mine last month. It was in Indiana and we drove my red Mazda miata with the top down most of the way. We had a great time, just the two of us. We also did a week roaming around Ohio in July. We went to the annual Erector set convention (like Meccanno construction toy) in Akron, Ohio. We also visited friends in Cleveland and saw two museums there and also two near Dover, Ohio. Lesley drove her White Miata that trip and again the top was down most of the way. We avoided the interstates on both trips and saw a lot of neat small towns and interesting people and places. We stopped in Williamsburg, KY and saw the Ark display. Wow, what a sight.We had a caregiver stay with mum for both trips. She and the caregiver have become really good friends, and I am not sure if she missed us or not while we were gone.   we have a few other trips planned. One with the motorhome to the Smoky Mountains near Dollywood, about two hours away. We are also planning a trip with the motorhome over New Years to Fredericksburg, Texas. Mum will come with us on both trips. Then Lesley and I are going to Hawaii in February. Mum and the caregiver will hangout in Tennessee then. After that no immediate trips planned but I am sure something will come up next year. We have joined a group of fellow RV’ers that have what they call “Hangouts”. They are casual, pot luck gatherings with no format and we all just hangout around the campfire and eat and chat. OK, some also have a bit to sip.   we have a miniature peach tree that was here when we bought the house in 2015. It was a few years old and produced about 50 delicious peaches the first year in 2016. Nothing since then. I told Lesley last winter that if there are no peaches this year, down it goes. It must have heard me. So far in the past week we have harvested over 500 peaches from the thing and still some to go. Lesley is busy stewing and freezing them. I pick, she fixes. Glad we like peaches.   well guess that is all for now, my tea cup is empty.

GeorgeLesley

GeorgeLesley

 

I should go & read my own blogs when I am having down days :)

I guess you can not have all good days every day sometime have to have down days, when you question every one's love for you & think you are all alone in this wide world, and should just quit trying & go & live life  without interacting with any one. ok so I was mad at hubby & brother thinking no one loves me  or appreciates me & only give me hard time even when I am working my butt off  stepping out of my comfort zone  & sill all they do is point out my shortcomings, maybe I should just quit & live on my own, kido is now on good path & will be ok if we are together or not, ofcourse now I am back to my old self fights with hubby & brother all are done & I am back in love again, but man I should read my own blogs  & learn from them. all is well now in Asha-land, kido is enjoying his stressful & intense medical field where he has already learning about human anatomy & dissecting cadaver  (human dead body), I was telling him about girl fainting in my 12th grade biology class when frog we were dissecting jumped off the table lol. It seems no one fainted in his class while their anatomy class,All are very smart dedicated kids who are there because they want to be there. I am so happy & relieved for him, he chose the path by trials & errors, he did not enjoy work which did not have human interaction, he did not enjoy engineering  or accounting field though he tells me he did not know what engineers did all day sitting behind their laptop, I am glad he did not meet all these NASA engineers, and thanks to my illness met all wonderful doctors & could see their impact on patient outcome. I guess I still like to take some credit even when I know I was just dog under bullock cart, bulls(kids)do all the work dog just keep them on straight path,  this is analogy used by my hubby in describing parent's role in raising their children, & my brother says oh man your husband calls you dog & you don't even realize its verbal abuse & say it proudly hehehe. (lol). Now you know why I love my family & will be so lost without them in my life.   Asha  

HostAsha

HostAsha

 

something I learnt today on my super soul sunday series better keep in mind for my own sanity

As you guys know I am sucker for Oprah's super soul Sunday series, & learn valuable life lessons from it.  As I have mentioned before I feel loved by feeling of appreciation expressed by my family members. on yesterday's show guest said something very important, whatever we always wish for is usually never enough, so if you wish for more money, however amount of money you get its never enough, same way with all other items, if you always feel loved by words of appreciation its never going to be enough for you to feel loved. which I totally get it, I am writing it down so that I don't forget this valuable lesson. I should know by now through all action of my family & extended family & friends, I am enough  & don't need anything more to be loved .   Asha

HostAsha

HostAsha

 

I am so relieved we did not screw it up

I am so relieved my illness did not screw it up our son's life. I stroked at age of 34 when our son was just 7, and I went through severe depression for a year, luckily hubby held our fort till I picked up pieces of my shattered dream & broken life & started building our new normal with help of my family & friends who chose to stay in & some new friends came in. our son saw up close & personal how doctors helped our family rebuild our life together. kido shadowed lot of my doctors during his high school years which  helped him decide what he wants to do in future.  our son is all-rounder,  he is very bright in studies but equally passionate about video games & playing outside with his friends, and quite procrastinator, so I always worried about him. I always told him he has potential to get into top ranking colleges, if he plans & study properly instead of doing things right at the last moment. though I have noticed with him, if he wants something in life, then he works very hard to achieve that dream, & getting into medical college was his dream, so he worked real hard in his undergraduate years, passed  with highest honors in his department , aced in his medical entrance exams, & excelled in personal interviews, & finally got into multiple medical colleges, he chose one of the top ranking medical college. I am so relieved my illness did not screw up future of our only child, I feel all credit goes to my hubby's strength, had he given up on us  I would have royally screwed up kido's life. so very thankful to how things have unfolded in my life. My mom's only wish in her life is one of her children should become doctor & now her grandchild is going to fulfill her wishes. she is on cloud 9 along with all of us. Now we pray he becomes best doctor & make a difference in people's life. Now that he is becoming doctor he is already commenting on my food habits lol , but oh well I got to take something good with something annoying things too Asha      

HostAsha

HostAsha

 

Tough Decisions

It's been a little over a week since Gary had another fall.   It's about the sixth time since we moved here two years ago.   He doesn't get injured in the falls because I'm always there to break the fall, but can't always lift his dead weight to avoid it when he starts going down.   This last time, he waited until right after his caregiver left to inform me he needed to use the toilet.  She had let him sit and watch t.v. for several hours while she did some dusting and cleaning floors and then did his leg massage, so he hadn't napped and was very tired.   I knew it would be a difficult transfer to his wheelchair to get him in to the bathroom, but tried to talk him through it.  His brain was in the "OFF" position and he wasn't getting it - so instead of pushing up and over, he pushed up and straight forward going head first toward the floor.  The full force of his weight was too much for me to get him back down in the chair and I ended up lowering him to the floor.    Once he is on the floor, he is like a fish out of water, especially when he's tired and the brain is in the "OFF" position.   There was no getting him back up on my own.   I spent a good half hour trying to move him back toward his recliner chair so I could at least sit him up and let him lean against it - he pushed back too hard and moved the chair out of the way, so that wasn't working.   He still had to go to the bathroom and we had already wasted time trying to make him comfortable until I could get help.   I tried to call a neighbor who was home  but they weren't answering the phone - probably both sleeping since they work evening and graveyard shifts.   I called the non-emergency number for the fire department and while they have been very responsive in the past, this time they were out on an emergency call and had another lift assist after that.  We could have waited as much as an hour or more for help from them.   I put us on the wait list but continued to try to find a neighbor to help out.   An hour and a half wait could have resulted in one big mess to clean up if he had to wait that long to use the toilet.  I finally texted another neighbor  and asked if anyone was available to help me get Gary up off the floor.   She responded immediately "I'm on my way."  Between the two of us we used the gait belt and tried to move him closer to the television stand (something sturdy that he could grab hold of), but he was determined to do it his way and kept trying to raise up and on to his power chair.   Nothing I was saying was registering in his brain - it was Gary's way, or no way at that point and we finally got his butt on the chair where he could use the arm of the chair to push up the rest of the way, but not without straining a muscle in his lower left side (good side).   I thanked the neighbor for helping and immediately got him into the bathroom and with the assistance of the grab bar on to the commode in the shower area.   I didn't feel the strain in my own back until later when I tried to put him to bed for the night and he could do absolutely nothing to help so I got the full brunt of his weight getting him from his power chair and on to the bed.   I gave him some Aleve for his pain, but was afraid if I took anything for my own pain I wouldn't wake up if he yelled at night when he had to urinate.   Vicious cycle !!   In the past week, his back has been healing with help from the Aleve and using the shower massage on it when I shower him and the massage cushion when he's on his recliner.   Mine, however, hasn't improved a whole lot and now I'm faced with either trying to find a place to put him while it heals or possibly long-term care for him as I'm getting too old and out of shape to do all the lifting without his help.   Today we are headed to Chandler to check out a Memory Care facility and see what they have to offer and if they will "break the bank" in order to get the care he needs.  Not looking forward to it, and already feeling like I've failed him - even after 15 years of caregiving for him on my own.   I know I shouldn't feel that way, but I think it's a natural reaction.  Will blog again when I know more......   Sarah  

SarahR

SarahR

 

Getting out a bit more.

I walked into church today at Bateau Bay Anglican Church and five people lined up and gave me a hug. It felt good to be welcomed back after being away for three weeks. Some of the church people I saw last week when the  care worker escorted me to the shopping centre, others I had spoken to on the phone. The lady who often sits beside me took a card out of her handbag and gave it to me apologising for forgetting to post it. It is something I have done myself so I just smiled and thanked her.   Yesterday I was taken to the Combined Stroke Group morning tea and other friends did the same, hugged me, gave me cards, welcomed me back. I am not fully recovered yet but am starting to get out for a couple of hours without feeling overtired. The nursing staff were right when  they said I would feel really tired  for the first  couple of weeks. I so grateful to those who have volunteered to drive me to one of my doctor's visits or one of the places I regularly go to. I am glad some of my friends have been willing to put their concern put into action in this way. And for those who have visited me and brightened my day.   I'm glad I went to the Stroke morning tea as there was a very good guest speaker, a local neurologist who with a team of other health professionals is putting into place a system called "Telestroke" which will streamline practices with hospital admission departments so that people suspected of having a stroke will be given priority and access to a neurologist, a CT or MRI scan and blood thinners etc routinely to lower the risk of deficits. It seems so logical but has never really been available outside of city hospitals. It is fantastic that linked together by technology a neurologist or neurosurgeon could now supervise this process in smaller country hospitals where it had previously been impossible to access such a service. It will certainly make living in country areas and having a stroke much less of a risk than it has been in the past.   I am not sure when I will be driving again but have to see the neurosurgeon the first week in September so that should be decided then. I am lost without a car here but with kind friends wanting to take me here and there I hopefully will not get cabin fever. On days when the weather is fine and sunny I sit on the verandah and read or simply watch the world go by. There are people walking dogs or pushing babes in strollers or just walking back from our little row of local shops so plenty to ponder. And I am willing to put my feet up and rest if that is what is required to get back to full health.   Once I would have become restless and fought against this enforced rest but now I just appreciate that I have had a very dangerous operation and have come through it relatively unscathed. It would not have happened a decade ago, we have come a long way in the last ten years as far as technology is concerned. At 72 I am an older lady in the eyes of the medical profession and am thankful they agreed to do operation. A couple of days before I left hospital a man in surgeon's scrubs put his head around my curtains and said: "Mrs Wilkinson, you are a success!" and I am. No longer do I have a time bomb threatening to blow up in my brain, I now have as much chance of living to a ripe old age as everyone else.   I have one more operation to be done, the thyroid, and then I will commence a whole new way of life. Hopefully I will be able to travel, see a bit more of Australia. Because of the lymphoedema international travel is in doubt so I may never get back to England or over to Canada but trains and buses and  cruise ships may still be practical. I would still like to travel with a companion but with grandgirls growing up maybe they will be suitable companions.   My family are much relieved by the success of the operation and my continuing recovery. I am glad I was able to come back to my own home and not have to be a burden on one of them. I love my kids and grandkids but having had to look after my parents and then Ray I know what a toll that takes on your life and I don't want that for them. So right now I am sitting here counting my blessings. Including the blessing of being back in here in my own home.    

swilkinson

swilkinson

 

not feeling great about life in general right now

I am usually upbeat person, but last few days have thrown me off the track & I am not feeling so great about my life in general. ok now where do I begin, It started with my PMS, my blister which makes it harder to walk & trying something new at work & royally stuck because I don't know where to turn for help.   Now you got gist of my confused life, I still have lot to be thankful  for amazing family spouse, son, brother, sisters, mom, nieces & list is endless but I still feel lonely, miss having best friend with who I can yak & tell all my troubles.   Anyway I will stop complaining, I do have lot to be thankful about life in general  

HostAsha

HostAsha

 

Back home after the operation

I arrived back home from hospital this afternoon. The operation to clip the aneurysm has been deemed a great success. When they said a headache for two weeks  I wasn't thinking of a face ache but that is what I have. The medical team have been thrilled with the success of the operation in " an older woman". I must say I am pretty pleased myself. I will endeavour to post a longer blog at a future time. I just wanted to let you all know that our prayers were answered and that apart from heavy bruising and a little pain and discomfort I am just fine. Walking , talking and commenting on the world around me.

swilkinson

swilkinson

 

place to keep track

one of the most useful aspects of StrokeNet for me has been the blogging its therapeutic and useful to see where we have been in the journey. And in general just to keep track of the daily SH-T that happens . Perhaps someone reads about our issues and feels less alone on the wonderful stroke road. So my entry is-- Dan pulled a oldie but a goodie. He tried jumping out of the car while out youngest was taking him home. Me and a girlfriend decided to have a night out , Dan was at my work, fully aware of my decision to go out with my girlfriend. Wasn't thrilled but seemed onboard. Beth came and got him , made the McDonalds run and was driving when he decided she wasn't paying him enough attention and tried to jump out of the car. Another car stopped and luckily a Cop was out and about and seen it.  Ironically back in my working at the jail days I knew the cop. But anyhow- the cop did his best to deal with Dan ( Dan has no higher power he doesn't care much about anything ). Eventually with a cop escort Dan got returned to the home. And today we had his semi yearly meeting so tried to converse with him. He cried- ( sometimes his crying can be for the purpose of getting his way - sometimes its real) , everyone felt bad. And I told him for awhile he isn't going out. He goes out daily to either my work, my oldest daughters house ( not the daughter he tried the jump out of car with) and he also goes to the casino ( which has its own issues I do my best to balance) or out to our oldest daughters cabin. So this is not a deprived man, myself and his children have made sure he has a active life. But the man is so hard to be with. Many times mean as a snake. But he is Dad and my husband so we compensate and deal with it.  In this instance not much can be done to remedy except not take him anywhere anymore. But the reality is we still will- its who we are. Of course not for a few days cause you can't pull this crap and expect a basic BYE of forgiveness immediately . So we'll move on from this. Like I said when I started writing this its therapeutic to write and documentation might be useful some day to some one.  I wonder if there is a Guinnessbook of records for bad behavior - LOL

nancyl

nancyl

 

Looking ahead as cheerfully as I can

It is only a few days before I am off to Sydney to have the brain operation. I am not scared, my angel still has her finger on the problem spot. I am packing an assortment of bed wear keeping in mind I may not necessarily be able to pull anything over my head. I know it is a long recuperation but do not know the stages of healing. I have spoken to people who have had the operation but for most of them it was in their 40s not their 70s.   The school holidays are here and Alice and Trevor have been down from Broken Hill for a few days. It is always a chaotic time with them but lovely to have the company of a lively seven year old. The Nintendo Wii was used a lot and she tried to beat me at every game we played. Mostly I gave in and allowed her the victory. We went to the local parks, had some nice walks and she and Trevor managed a couple of hours buildings and castles on one of the local beaches.   We also had dinner one night with Pamela and the two boys. Tori was still in Adelaide having some extra tuition, with her major exams in four months time she felt she needed to do some catch up work. I will see her on Monday. I spend the weekend with Shirley and family two weeks ago. As usual  she is a tower of strength to me. She will be by my side right up till the operation time and there when I come out of recovery.   It was good to see the grandchildren, they are all so different but I love each for their positive qualities. Christopher is at University and seems to be doing well, the others range from Year One to Year  Twelve. I try to keep up with what they are doing, what their interests are etc. I have not been travelling much so I am glad Trevor has decided to come to the Coast for his week with Alice each holiday. It is facing that long drive, 14 hours each way, that I admire him for. I know many would not make the effort.   I am following my usual routine, that is making it much easier to find my way through the waitng days. It has been difficult at times not to  worry  that  my future may not be as I had planned but  I have promised myself to live as well as I can whatever happens. All those years of living with Ray's many disabilities have  given me the courage to look at my own future with a better attitude. We can do so much more if anxiety is kept at bay. And hopefully the days ahead will be better than I am anticipating right now.

swilkinson

swilkinson

 

The Chapter is Beginning

Well I am finally in my new home...well new for me. Still getting settled. I've met a very kind and smart doggie he is a chiwuawua. He comes to visit me if i'm outside at night sometimes. All I have to say is "Go home." and off he goes. My neighbors on the other side of the duplex do not like me i dont think. I had some issues with the parking situation when i first came. It is just one lady that lives there she is mentally challenged and requires assistance 24/7 so there are always at least 3 extra cars around the area. They were parking in front of my house and in front of the mailboxes. I don't do well on uneven surfaces so going to the mailbox was scary (on a hill). Anyway, I talked with my managing company and they told me everything was against the "rules" that we both signed in our leases and they would take care of it. They contacted the ladies' employer and when that didn't work they contacted their boss and then their bosses boss. The cars are no longer parking in front at all. I live at the end of a dead end street and have a full side (paved) for plenty of parking. Anyway, I don't think I am considered a great neighbor. oh well. I'm really very nice.  For the first week my daughter stayed here with me as she waited to move into my room at dad's until i had the carpet cleaned. She said it was to help me unpack. I absolutely love my daughter but we press each other's buttons and are each other's triggers. We can make each other have a panic attack. I have slept here by myself for the past 3 nights and I have needed the rest mentally and physically.   Kitty loves it here I think. She is playing with her squeaky mouse a lot and has 2 places to sit and sun and look out either the front or back window. I'm planning on getting her interactive puzzle things that she can play with and get a treat. She has become less active and her vet said she was a senior kitty. She is approximately 10 years old. She is my baby. I'm so glad we are here together.   I went to see my Psychiatrist this week on Monday. I really needed to see him...everything cognitive has gotten worse and I have been having panic attacks often. I told him I feel it is all the stress of the last two months and the stress of the move or at least I hope. He talked to me for some time about the kind of stroke I had and everything I have noticed. He brought up a word for the very 1st time...and it is a word i am terrified of...Dementia. In 6 weeks when I go back and things have settled a bit he wants to do testing for cognitive and memory things. He wants to get a baseline. His concern is not that I can be diagnosed with that now but it is possible in the future. It's different from Lewy body dementia...alzheimers. It happens over a very long time...the changes...and usually not complete. He told me he has been to seminar recently on the very subject and what science says is that there has been a problem in the past with diagnosing this. Many have never been diagnosed until it was too late and an autopsy was being performed and they found the brain changes. The best thing to do is keep a watch...get a baseline and hopefully will never need to use it. He also said eat whole foods as much as possible, no boxed or manufactured stuff. Eat organic when you can. Reduce sugar intake...especially refined anything. The number one important and most helpful factor is some form of excercise about 30 minutes per day. No need to kill yourself but don't doddle either. Science says that is the #1 way to reduce your chances for cognitive decline. I already have cognitive decline so it is especially important for me. My stroke continues to leave me with a lot of cognitive deficits. It's a lot to think about.   I'm trying to keep my mind busy and my body. I've been so tired. I'm trying to keep myself in check and get out of the house even for a little while. Reduce the urge to be alone. Believe it or not it is an urge. Life is exhausting to me. People are exhausting to me. Places are exhausting to me. Sounds are exhausting to me. Smells, sights, thoughts...everything sensory is exhausting to me. My urge is to avoid, but it is not what I should do. This is so frustrating.   My house is perfect, however. Two bedrooms, a great kitchen, a patio out back, a porch, really cool shelves with doors located between the wall joists, a storage room you get to from the back outside, my washer and dryer fit but I do have to leave the folding doors off that normally closes the area. I'm glad mine are actually nice looking and compliment the decor.   I'm going ahead and posting this unfinished blog. A lot has happened and I haven't been able to finish it. 

HostTracy

HostTracy

Celebrating Gary's 72nd Birthday

Tomorrow, July 8th Gary will turn 72.......hard to believe that he almost didn't make it past his 56th birthday the year he had his stroke.  Sometimes I wish I remembered all the Doctors names who treated him at Swedish Medical Center in Denver, CO, especially the ones who said if he survived the initial brain swelling he likely would not live six months - shows how much they knew about the human spirit...lol     Tomorrow I will take him out to breakfast at his favorite casino, let him play the slot machines for a couple of hours, and he will likely nap the rest of the afternoon.   He still sleeps a good 15-18 hours a day.   On another note:   We've had a good couple of weeks with the news that our daughter-in-law came home from hospital after 26 days, and is continuing dialysis for the kidneys and physical therapy on an outpatient basis.   While she is now cancer free, she gave us quite a scare after the second surgery when she went into septic shock and the kidneys took a direct hit - she had acute kidney failure.  After they finally got the sepsis under control she went through at least 10 rounds of dialysis before they finally decided she could go home and continue with outpatient treatments.   She's still sleeping a lot, but doing a little better each day.   We so appreciated all the prayers as they do work miracles.   Sarah     

SarahR

SarahR

 

Gardening Adventures - and a teachable moment.

Ah yes, an exciting day full of teachable moments...   I have a pretty bad ant problem under the paving stones. I went onto a gardening website and asked about the best way to get rid of them that is both earth friendly and not dangerous for Daisy. Daisy is a Golden Retriever who gets into anything and everything, even at 10 years of age. I got a reply - use diametaceous earth.  I have a photographic memory, and thank goodness, I didn't lose that post stroke. I could picture the container, and exactly which cupboard it is in. It's been in the basement and moved around for about 20 years, and that's no exaggeration. I can't remember the last time I used it. So, thinking it would be a great idea to start by trying it on the front path, where Daisy can't go, I set off to start torturing those hard working ants.  First squeeze of the bottle, and the plastic container cracked, spilling about 32 ounces of white powder all over the walkway, my bare feet, my sandals, and thanks to a well timed gust of wind, all over my clothes.    Lesson learned - what NOT to do: Wear good jeans, bare feet and sandals. Don't check for breezes when using a powdery substance. Be sure to use a really old plastic bottle, which will immediately crack open. Decide to sweep bits of it all over the sidewalk - which now looks like some kids went crazy with white chalk.   DO:   Strip down immediately, hose down shoes and feet before coming into the house. Wash all clothing in the washer. Forget that the washer is on and have a shower, as there is nothing like those nice moments of no pressure while there is soap in your eyes. Be sure to hurry, so that when you are getting the soap out of your eyes, you miss your eyes and your fingernail goes up your nose and thanks to the blood thinners, a robust nosebleed commences.  Change into pyjamas at 6:25 pm and call it a day.   Now all I need to do is buy some more on Amazon, along with a proper dispenser, and find a YouTube video on proper application   Lesson learned.   Geez Louise!          

SueC

SueC

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