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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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Almost hurts too much to share

I just feel like I have to get this off my chest or I'm going to burst. Right now I really need to get my spinal RFA and I'm having to ask the doctor to up my medication because it has been 4 months. I needed it scheduled at the 3-month Mark I can't go beyond that I've told them before. But they were trying to get me in again for the surgery which I have not been well I've had multiple sinus issues in fact I'm going to see a specialist for a second time and get a CT scan this week. That's something minor but it's caused me to have to take antibiotic I don't know if there's something that can improve my not getting so many sinus infections because I've certainly tried everything except to having my nasal cavity drilled bigger and I'm not really think I'm ready to even discuss this treatment. You know there's some the treatment she just might not want to do in life. So anyway I just don't know that I'm healthy enough to go through a surgery. I need to recover from all of the different things that have popped up this year such as my shortness of breath my excessive swelling they put me down as having congestive heart failure but no COPD thankfully but I have pulmonary hypertension which they say well they could do something to improve the blood flow to the lung if they decide that it becomes necessary to so I can't even think about all these things all I know is that I need to get in for a mammogram and all of the things that I needed to do or wanted to do in December is being overshadowed once again this is a horrible horrible demon pain. I mean I go from somebody who's smiling and playing bingo on the weekend to somebody that laying in bed or sitting in the chair and suffering trying not to move. It's all kinds of pain. There's the stinging the burning the stabbing and about any kind of medieval torture that's what's going on on my leg.   But I did go out on Thanksgiving with my son. I had a wonderful day. We like to play video game. We went to a buffet and we not only had turkey but we enjoyed Lobster as well. My son let me order something and so I was really happy and look forward to getting it for Christmas as he is always very generous and grants my wishes and then some. I only wish that I could do the same for him but I guess I did do a lot of that for a long time. But it was just so good to see him and to experience the love he has for me and to feel the love I have for him and we're not shy about expressing and saying it. But as I write this I'm crying because you see that day that Thanksgiving day that I was so thankful for reconnecting with my daughter something just Dreadful happened. When I call the number I got a recording that said it had been disconnected and was no longer in service. So I called her boyfriend's number and it said that I was blocked. So Panda King I immediately opened up the Google Drive where she had sent me many pictures the saying that it was too many to email that this was a better place to look at the pictures and it was gone it wasn't on Google Drive anymore. I guess I was blocked as a user. I mean she just erased me out of her life again. I've gone over and over and over what I ever said to her and I always said how much I missed and loved how many times I wanted to apologize for anything I did and she kept saying that it wasn't about me I hadn't done anything and she acted like I had nothing to be sorry for and what I asked and why she kept saying that it had to do with her. I kept telling her how proud I was of her and the life that she put together for herself. To tell you the truth I am forgotten how many times I talk to her I could go back and count them though I remember and what we talked about I need one because there wasn't that many. And I always kind of felt that because her boyfriend was around and she was talking to him off and on I just felt like she didn't give me much attention during our conversation. But anyway it seems like she wanted to make sure that I knew about the other grandmas in the family her boyfriend's mother and the baby father's mother that my grandson has stayed with which made me feel like an utter failure. But it also hurt me because I felt like she had never brought him around to meet me and visit I could have met her out in the community somewhere even at one of my Hospital appointment we could have gone out and I just don't understand why she never brought him around me that I was somehow those terrible mother that didn't deserve to have contact with the child. But we also talked about how she went and thought out her absent father that since he left when she was a baby she never knew. And I said well I hope that you don't allow your child around a man who was not legally allowed to raise his own children. And she says oh no oh no. It kind of felt like a betrayal but yet I told her that I understand that she wanted to see it for herself and see if she did she said. But I don't know what to believe about anything she ever said during any of those conversations because on Thanksgiving morning when I went to call her I couldn't reach her I couldn't reach the boyfriend and I've been blocked from the pictures. So my best friend trying to cheer me and give me hope said maybe it had to do with the phone service maybe she didn't pay the bill maybe this maybe that but it all comes down to know I was certainly intentionally blocked I kept telling her how proud I was of her and the life that she put together for herself. to tell you the truth I am forgotten how many times I talked to her I could go back and count them though I remember and what we talked about any John because they wasn't that many. And I always kind of felt that because her boyfriend was around and she was talking to him and I didn't feel like I got the attention during the call. And then she told me how she went and looked up her absentee father but since he had left when she was an infant she never knew. I said well I certainly hope that she wasn't having that child around him because he was not legally allowed to raise his own children. She assured me she wasn't but it did feel like a betrayal but I tried to understand her need to see it for herself. All of that was so unimportant I just was so happy hearing her voice. I always hoped I would hear it again but I didn't know what to hope for. But then I found out she had been close to me a few times when she came to visit friends and I just ask her why didn't she come see me the baby to see me and she just cut me off and said well the priority was for the baby. As if a nursing home or something that was going to be a bad thing on a baby. But I did find out that and it appears to be at a boyfriends house and she met the boyfriend because the mother was there at the hospital when the young man had a lung transplant and so she was offered a place to come live out of the Ronald McDonald House and that was a few years ago and she's been there and then the man tells the part of his family she's not married but I want to she says. But when I was talking to her I caught her in quite a few lies about things she kept saying how she loved the baby's father so much and had to work it out that taking a nice parenting plan Etc. But as I recall she said she did not love the baby's father and that the baby was an accident but she was going to have the baby and she couldn't decide whether she was going to give him up for adoption or not but then of course when he had congenital problems that needed surgeries that was off the table and it was too late for an abortion so there she was with a sick baby and nobody to help her so the baby's father has done a good job of taking care of the baby in fact I think that he has custody of the baby because most of the pictures were taken it seems not by her and she was in hardly any of them anyway the parenting plan of the future will be that he gets the boy when it comes time for school and I said well where is he now and she said with his dad though she hadn't had him at all this year because she's been sick she said and she kept telling me what the doctor was looking for apparently she was having a hard time getting the doctor to do an MRI because of symptoms she was giving him and she just kept saying different things about how she was sick and I said well what you're talkin about is usually fatal it has to be treated is this what you're talking about and it's like she just kept wanting to make me afraid that she was dying and I kept saying well go to the doctor find out exactly what it is because a lot of things mimic things so you've got to go to a specialist and get diagnosed don't just look on the computer and think your doctor has to go looking for this it was the strangest thing. I mean I've never talked to her about my breast cancer scare but believe me I wanted people telling me so it's going to be fine it's nothing I mean I wanted them to flat out lie to my face I wanted that hope. so it was very strange that my daughter kept talking about how she had this life-threatening illness probably and that she would most likely have to get on disability and I said you're only 27 get to a good specialist and I'm sure that you're not going to have to be on disability. well she told me how awful working was on her body and I just got this feeling. She wanted to get disability like her boyfriend who was indeed quite ill but doing okay at this time. well I asked if they were going to get married because I worried that would the mother still allow her to live there if the worst happens and he passed away I mean the mother may be happy that her son is happy but maybe the mother didn't expect him to survive or something. but I didn't say any of that I held my tongue of course those are the ranting fears of a mother at midnight. anyway I just praised her and encouraged her to have hope go check out the doctors and please keep me up to date and she asked me about my health but she didn't really want to listen to me go on about it. she never tried to talk about anything except a few things on her agenda tell me that she's probably dying the way that she looked up the deadbeat share pictures that the boys being taken care of the father because she's too sick to take care of him and all I did was support her and she led me to believe that she was happy talking to me and that she wanted to be informed about things. I guess I didn't talk about the things she wanted to talk about she asked me if my son is still around me and I said well yes and she answered well of course. so they had a falling out which she holds me responsible for but I just waited for her to say something else I didn't want to get into an argument. so she told me that she was going to be cooking on Thanksgiving and then going to her boyfriend's family later in the evening to eat and I said well sounds like you're going to be busy if I don't get a chance to talk to you before tomorrow then I hope you have a happy Thanksgiving she sounded very happy. and then I go to call the number like she knew I would of course I would of course I would contact my family member on Thanksgiving who's my daughter who whom I've been very close to during her teenage years and only after the stroke things were so horrible. But that's probably wishful thinking and if my son's any indication the problems go way back. In fact my adult son as always use the phrase doesn't she remind you of someone. Yes I put up with that peekaboo Behavior from the deadbeat finally figured out that the only reason he returned was that he delighted in looking at the Fallout. he like to be told how much he was missed and how important he was and how much everybody cried and how we felt because he wasn't there at some important holiday. but he was not remorseful for choosing not to be there he would blame it of course on me with some ridiculous story that my adult son has thoroughly quizzed him about all these things and my son has decided that the man is nuts and I'm remorseful. He's very anti-social believe me it's hard to lose take legal custody away unless they must so I had physical and legal and so he looks at it now that the children were taken away from him like he had no hand in it. but the courts had said he could go to supervised division again hoping to somehow reunite the children with their father. But he never did it he uses the excuse that he was out of state and that he just wanted to take his kids out of state. I think the court had a pretty good idea that if those kids left the state I would never see them again. I saved those children I raised those children I love those children nearby children and yet they are still his in a way he does not deserve my son says he likes the way things turned out they turned out the way they were supposed to and he's talked to his father over 10 years he listens but he tells me Mom he's never been interested in getting to know me he just talks about you and I said yes I am going to be the only senior citizen in the nursing home that probably still needs a restraining order. I never was in a support group for single mothers I was a good role model and I was proud of who I was and I worked like crazy and I put them around other family members that loved us and friends that cluded Us and Them. they never wanted for anything well I mean they wanted thing what kid doesn't drive their mother and saying about wanting thin.gs.. it's good that my son he worked for his first car but not my daughter I helped her out.. and yet she's jealous of him.        my friend says don't feel insecure as a mother and I said no what's done is done dealing with stroke problems not parenting problems but I sure didn't need a broken heart right now. first time is always protected me and never passed on anything that we're in his communication with it father. only the beginning I asked and then I said no don't tell me. he said no he would not do that to me and he said don't worry about all his word vomit. well my daughter was not as kind. and so I was dealing with all of those emotions so old and dead and unnecessary. I had a professional career and it was cut down because of a stroke he was old news. Anyway it looks like my daughter enjoys his tricks. so my very best friend says to me will don't judge her you don't know what's going on. And I said look I am judging her but I didn't say anything that was judging her but I'm trying to find out who she is now because I don't recognize her and I came to the conclusion that I was proud of her and the conversations were nice I tried to be supportive when she said that she thought that she had something that might be terminal you know I just I acknowledge that could be real symptoms but maybe not something so Dreadful I was not judging her until I got that phone message and then I was like I've been played for a fool she does not love me she is not miss me and I'm kidding myself and my friend couldn't see that that was killing me. always wanted to be accepted by her mother and all she heard and me was that I was being judgmental I don't know perhaps we all hear what we want to hear and so that's why I'll never understand what went on all I know is that daughter disappeared again cast of focus on but I have one good child who cares about me and that's okay maybe after all this time my daughter will find what sea name I hope so but I can't be worried about it anymore and I guess it's obvious she can manipulate things and people and she's going to land on their feet and of course iiove her I want her to call me now. She punishes me for having a stroke, leaving her to fend for herself alone. She blames her brother for not helping her more. But he did. She quit her job. Anyway my happiness never lasts long.        

SassyBetsy

SassyBetsy

 

Time flies...

Well I complained last month about how fast October went and so indeed did November and we are a week into December already. My life is back to being routine again. It took a lot longer than I expected to get over the brain op to clip the aneurysm and it was difficult for me to go through that but I feel I am back to normal now. Thank goodness. I can deal with a whole day now without a nap, do three things in a day instead of two and don't have to run home for a nap between 2pm and 3pm. I found that so restricting so I am glad that time is past.   Now I am more energetic I am also busier. I hadn't been out to Broken Hill for ages so this time I went for nine days, including a weekend when Trev had Alice and his birthday when she came to him after school. It was hot and dusty but I preferred that to being on the Coast where it is smoky from the distance bushfires and the air quality is very poor. Our bushfires have been burning for weeks now and every westerly winds puts a pall of smoke over the coastal plains. I am not allergic to the smoke but a lot of people develop asthma from it so the hospitals are full.   I have been selling raffle tickets for Lions three half days a week at Bateau Bay Square our local shopping centre so the week fills up pretty fast. I quite like it as I am on with another Lion's Club member and so we chat between customers, we are dealing with the public and I find people interesting and from time to time I catch up with a friend I haven't seen for a long time. I am finding it difficult though to keep up with my usual housework and gardening so find myself doing things like ironing in the evening to keep it up to date.   There is a lot to do with all the end-of-year events. I went to the WAGS Christmas party yesterday. Seemed down in numbers from a few years ago as sadly we have lost a few of our members. One of the guests at my table was going back years trying to recall names, she has had a stroke. Seems she has plenty of long term memories but seemed to have very little short term memory. She and I worked together 28 years ago and she recalled several incidents that happened during that time. She has a mobility problem but still has a great sense of humour and I think that is what attracts people to her.   I am blessed with some wonderful people in my life. People who others might consider insignificant I know as prayer warriors, cheer leaders of other people with disabilities, great friends and neighbours. I love people who are a bit different, who have been tested by life and come through it. Those people who are willing to share their experiences and have a great compassion for others. I don't care if my friends are not perfect, do not hold the same opinions I do or come from the same background, in fact I would prefer that they didn't. As long as they can put up with me and my funny little ways..lol.   The two local families will be with me here for lunch on Christmas Day. This is Shirley's idea as she is moving in January and wants the house packed up by then. They will still have a week away at their holiday house. They will need that time to relax and unwind before going through the house move. The house they are moving to is only 6 kilometres from where they live now but everything still has to be packed and unpacked. The house has to be fully functional before she can start her new job. She is going to be an Aged Care Chaplain in a facility that specialises in Dementia  and seniors with other mental illnesses so it is going to be quite a job getting used to her new duties.   Trevor and Alice will be here the first two weeks in January. It is easy to keep Alice entertained now she is seven and the Adelaide kids will be with their Mum so I guess we will have days with them too. I love my grandkids and love to be with them. Okay it is disruptive but January is a month where I have few duties anyway so spending time with them is not a problem. Maybe we can do some things we have put off in other years as Alice is older now. I know Trevor loves to be back on the Coast away from the dust storms and high summer temperatures of Broken Hill for a a while.   Well I probably won't do another blog before Christmas so I will wish you Happy whatever it is you celebrate. For me it is Christmas and unlike the first few years of my widowhood I can actually enjoy it now. Since the brain operation I am even more aware of the preciousness of time and how fleeting our time on earth is. So happy holidays, or happy holy days or whatever has meaning for you and may 2020 be a great year for us all.

swilkinson

swilkinson

 

colonoscopy...

well today was my colonoscopy. My 5th. The reason was for I have pre cancerous polyps. Great news, I have no new polyps.   BUT I have 2 internal hemorrhoids that are the largest he has seen in his 25 years of practice. OH BOY. SO ... I go see a specialist Friday, 13 for a consult . ARGGGGG.. my poor buttocks but two things to take away...1. I had the BEST nap ( thanks to anesthesia) 2for the next 5 years, no colonoscopy.

ksmith

ksmith

 

I am so rattled & feeling loss of great spiritual teacher

when we went on our vacation to India got great news of one of the family member which filled our heart with so much joy that I still smile thinking about that great news, & while coming home from India we got worst news on our whatsapp message which rattled both hubby & me no end & it tears me up every time i think about it I still can't believe death of our spiritual teacher with whom our paths crossed right when I felt like I was drowning  in grief of my stroke  & disability & changes that brought in our life. he was our guiding light to get us through that dark tunnel journey. you know meeting him & bumping into right books at the right time has made me believer of statement teachers will always appears when student is ready. I know for me he was my teacher who helped me navigate those dangerous water of my life's journey.  we have known him for last 15 years, so his death news was totally unexpected, he is renowned teacher of our spiritual books with whom you can discuss things you are trying to understand in life & he will explain in layman's terms without any arrogance of his knowledge or anything. right after my stroke when I was struggling with my self worth issues & my constant struggles with kido in trying to make him try new things & his fights & not getting any thanks in return for trying my best but rather how I was such a pain mom was making me one very frustrated mom & I had asked our teacher how do you find joy in thankless job of parenting or being wife whose husband will only comment or talk if things have not gone wrong in my dish.  his response to my self centered query was brilliant, he just said do your duties as offering to God & you will never expect thank yous in return. It was one of the light bulb going in my head at that time.  I should do my duty as wife & mom with full integrity & good intention without any returns, & I will get my returns when I see my son & family happy & successful in his life. today I know that's the case, so I feel hugely indebted to our spiritual teacher & feeling loss of his life immensely, I still can't believe I will never see him again :(, but I know he has left legacy of 100s of people whose life he has touched in past. he was instrumental in staring summer camp in temple near our home  & starting all these hinduisim classes where adults can meet & discuss all our old scriptures. I know 100s of kids & adults have taken advantage of these great things in our temple in last decade. I was there volunteering till my kido was there in the system, & thanks to that we have been associated with very like minded people in our neighborhood. Even today hubby & I both go & attend one of the classes offered by temple in our neighborhood.  something I look forward to every weekend. I had to write this to get off my chest & mind this news.   Asha    

HostAsha

HostAsha

One more item off bucket list

I am still recovering from the loss of my best male friend last month, but slowly getting some better. His widow has called for help a few times, but not much. That makes me feel like she is finding her own way thru the grief and that is a good thing. I am quite willing to help, but will only do so when asked.   On another note (pun intended), long time readers may remember a blog I wrote in 2014 about wishing I could play a musical instrument. The Essence of the blog was that I have always envied those that can just jam away with reckless  abandon playing an instrument. To set this up, first of all I have no known musical talent. Logic, math, science, mechanics, etc, etc, that’s me.   well for several years now I have watched Lesley play a mountain Dulcimer on occasion. I have wondered if I could play a simple stringed instrument. My concern has always been that since my stroke in ‘06 my left hand fingers move, but not quickly so playing an instrument that requires both hands to be active would be a problem for me.   fast forward to now. A few weeks ago I went to a new music shop that just opened up in our small town. The owner plays and teaches the mountain dulcimer and Lesley knows him. So I went to his shop and talked to him about playing and explained my problem. He smiled and told me that the mountain dulcimer was designed to play only one string with the left hand. Eureka! All I have to do is slide one finger on my left hand back and forth stopping where desired to create the intended note. No multi finger cording with three fingers moving at once needed. Strumming with my right hand is no problem.   So, I bought a very good used mountain dulcimer and a book and few other odd bits and am now practicing some everyday. My song list is limited to a few simple ones at the moment, but I think I can slowly learn to do this thing. I can get lessons at the store and have 4 free ones coming with the instrument. So far I have just practiced at home to get familiar with it. Now I know enough to at least ask questions and have some idea of what he is talking about. When I stumbled thru the first song by myself I really felt as though I had accomplished something I had dreamed of all my life but really did not think I could do.    Lesley has started to slip into my practice room now as well when she hears me practicing. I always let mum know when I am going to practice so she can remove her hearing aids! I will not be doing any concerts anytime soon as my song list is all of two songs at the moment, but hey I have only been at it two weeks.   so one more thing off the bucket list and a new hobby found, something that both Lesley and I can do perhaps together in the future.   well guess that is it for now, just had to crow a bit about another fantasy actually coming to pass.

GeorgeLesley

GeorgeLesley

 

We are back

We just returned  home from our month long vacation to India, Singapore & Malaysia. It was fun filled trip. We had planned to do sight seeing with hubby's side of family in small AC Mini bus, trip was planned by hubby's older brother & we had lot of fun together. I get along well with every one so traveling together is always fun, though because of my unsteadiness on getting up & down tall steps & places if there is no railing,  hubby was always by my side & my sister in laws, so I always felt safe though I did tumble at one place but no major damage. This trip we had planned to visit hubby's childhood friend in Singpore, he has been inviting us for ages, finally we made it happen & had great time with them, attended wedding in India with family & reached home just in time for kiddo's thanksgiving vacation. Kido  is enjoying his college & getting mature day by day & don't seem to hate me any more & do love me. today we decided to go for frozen 2 movie luckily he sat next to me instead of dad & was ok with me holding his hand, one of the highlight for me. my heart filled with joy & gratitude. one of the song in movie which hit  the chord with me, when you are in darkness just take one step at a time & do the next  right thing, don't think about future, just take one step at a time & do the next right thing, & soon you will be out of tunnel. That song is so true, I am here living proof , & lived to tell it while siting at the movie theater with love of my life & holding his hand and feeling grateful  & happy to be alive & surrounded by so much love & happiness. kido & I both loved the movie, hubby was dozing on & off  while both of us were having fun in our own way lol.   Asha  

HostAsha

HostAsha

 

Heart Felt Thanks, I am lucky

How can a month be full of some of the saddest moment and the highest highs and show me where the gratefulness grows.   Today I'm morning a very good friend of mine here in the nursing home that I met shortly after I arrived years ago. There were times when I thought that she was going to outlive me even though she was in her late 90s. It's a mystery that she did not reach a hundred I'm told but I'm not sure which number after 5 she reached but anyway there she was sitting at the table with the deck of cards I know I seen her before and she always was playing solitaire. Even in the dining room I would see you're playing solitaire waiting for her food or waiting to be taken somewhere. She never went anywhere without her cards. No I was too caught up in my problems with my leg but when they did get me on a good management plan I would go into the common room pretty often and see her there.   One day she just called me over and safety want to play cards he talked clear and she seemed to have good vision and hearing and so when I found out how old she was later on I was surprised. But on that first day she taught me how to play double solitaire. I never heard of The Thing but not being a solitaire player I wasn't sure about any of it. But then other people were telling me that she taught her own way but that really wasn't how to play solitaire and of course I had a good laugh over that and that was just fine with me if I was playing my own way.   So then as we got to know each other she sometimes didn't see so well but she was very hard of hearing in fact she needed to wear hearing aids to even hear it all and when they weren't in well we just played cards. Sometimes I'd order food and share it with her in the dining room and we were friends and played cards pretty often. But then as my leg pain would come back I would be in my room more and I wouldn't see her. And she'd come and see what the world was I doing in my room. And sometimes she would come to find out how she could get some more cards. When I first met her her cards were disappearing like crazy. And of course we would get them from the activities director here and pretty soon they said they couldn't give her any more cards. Well then I stopped at the store and I asked my friends and family to send cards and they did sometimes they were kind of cool cards to and then last Christmas my son went to Costco and bought a huge package of playing cards. He said don't give them to her all at once. And I gave her probably a pack of month they weren't disappearing so often and at least she knew that she could come down and asked me how to find some cards and I always had some. And if you could see the look on her face of relief Shear relief as if her very existence relied upon being able to play cards and I think it did. Well this past year I had to spend quite a bit of time in my room and they said well why didn't you just go out in a wheelchair not understanding that vestibular problems that come about as a result of an infection are related to stroke. Let me explain that a little bit more clear every time I had an infection in my body and at this time it was my leg from a lymphedema problem I would have all of my stroke deficits bombard me. Sometimes I would have such shaky hands and no coordination and other times I could barely be able to sit up straight I would just always keep going over to the side it seems like whatever my stroke deficit problems were or enhanced greatly. And nobody wants to leave the room like that. And I had a lot of pain. A leg infection in a leg that already has CPS is not anything anyone should have to live through. But I made it through and I think that I've grown accustomed now to have my legs wrapped but I didn't see your 4 month really it seem like when I was out there she wasn't it just worked out that way. And then when I did see her she says to me you've been away a long time where did you go. And when I explained to her where I was she nodded we exchange the I miss yous. I often wondered why she had never come down to my room but maybe it was harder for her to get around now to. But anyway we were back playing Solitaire again. But this time we were able to go outside and play by the fountain like we did before because she had had a number of fall because she would lean over to reach a card and so they didn't really want her out of their sight. She was also having to use oxygen and there wasn't an oxygen thing on her wheelchair so they would just set it next to her. She wasn't eating in the dining room anymore she was eating in the main common room by the nurse's station. Sometimes I stayed down there with her but when I discovered that they had put her on a pureed diet I couldn't in good conscience eat in front of her. I saw her face that she tasted the food and she just looked disgusted and said Bland. She only ate about 50% before and now she ate even less than that. She was somebody that had watched her weight closely because after all she was an Olympic silver medalist in Diving. She was also in the Canadian Air Force during World War II and taught women exercises during that time. She also spent a lifetime teaching exercises two women everywhere. She was truly inspirational. And here she was always in all the activities and you would just see her playing cards she loved to play cards. I was very lucky and I'm thankful that I met her and got to spend time with her.   The other thing I'm very grateful for is that my daughter and I have reconnected and I've enjoyed seeing pictures of my grandson who has undergone surgeries to repair congenital problems and he's healthy and thriving. My daughter and I seriously can't remember why did we have problems that's what we said to each other and we laughed. In the long run all those things are so meaningless. The bigger loss outweighs those Petty things. I know she miss me and I know if I had never stopped reaching out she would have thought that I didn't love her anymore so I never did stop and one day she just saw it me on social media looking for her and she decided to contact me again. When you're a mother you forgive everything. You just love. But unconditional means. So I'm so lucky I'm so very very lucky they have both of my children now. Now I just pray that they would be able to work out their differences and heal .  It all  goes  back  and was about stroke stuff. It really threw everything off in our lives. But enough is enough and they just want to heal and be content. We're not guaranteed forever and we don't have time to lose. So I'm just very grateful for all of these things. I'm grateful that my lymphedema is controlled now and I'm actually wearing a pair of shoes again today Hallelujah! Anyway when I really think about it I could go on listing things to be grateful for that's not the problem the problem is truly remembering those things when I feel down or aggravated. So I'm glad that at least one month out of the year we take time to be thankful and from the thankfulness to be joyful. And this is a fun time of year to eat LOL I hope everybody here has a very wonderful Thanksgiving I know I'm grateful for this site and for all of you have been so supportive all these years and also forgiving that I am not always the listener that you are to me. Happy Thanksgiving!

SassyBetsy

SassyBetsy

 

Bummed out

We just attended the funeral of my best male friend of over 30 years. We went thru so much together, he was at bedside when my first wife passed, I was with him thru his divorce, present wife and I were married in his house by the preacher that preached my first wife’s funeral, both he and his now widow asked me to counsel with them before they were married, etc, etc. he and his now widow were happily married for over 20 years. He was too young, only 62.

He and I could and did talk every month for usually over two hours about everything and nothing. His widow is now asking for my assistance in settling things and helping her set up he finances. A task that will be as difficult as any I have ever done, but I must do to fulfill my promise to him and her made long ago.

He had cancer and from what we all expected, he would have some good time after what appeared to be a very successful treatment regime. Not to be. He passed two weeks after treatment was completed. Shock, misery, anger, no words to describe how I feel now with no desire to “get over it and move on”

Thanks for letting me rant.

GeorgeLesley

GeorgeLesley

 

A few bullets will tell it

And I mean the kind of things that are on PowerPoints or you know list those kind of things oh the word finding problems I have! Anyway I've missed everybody and mostly missed the days when this group was my daily meal. But maybe I can try to explain my last year.   * NOV I did the spinal trial and surgery was planned for April for perm electrode   *Then after Christmas I had Cellulitis over amd over for months *They said I have kidney disease amd heart failure disease due to having high blood pressure and diabetes formally diagnosed at 20 so now I'm 55 so after 35 years most of my organs and stuff have been worn down and or not exactly anything to hand down which is why I decided to donate my body to science rather than to be a formal donor. I figured that science could use a whole body every now and then. So I did the paperwork for that and got that all situated. And then got down to the mean business of surviving because I wasn't ready to donate anything yet.   * so then in the summer the cellulitis stuff finally stopped because I met this wonderful wound care doctor in a bariatric wound care center at  a large teaching  Medical Hospital and he put me on a compression therapy. I wear something called a circaid juxta lite compression garment. It's just a rap with velcro to keep my legs compressed all day. I wear it under my clothes I'm used to it and it keeps my leg swelling down. I couldn't wear the stockings they would hurt and I would take them off scream bloody murder about it so this works nice I can make an adjustment here and there on it. But then the next thing he did was get me hooked up to a pump which makes my lymphedema system back up into the circulatory system like it's supposed to and all I have to do is zip on these blue boots that look something like an astronaut suit and air is in there and it massages the leg there's nothing more wonderful than my time spent in these. I try to use them as much as I can. All of that has been working very well for me and I have not had a cellulitis since I've been doing this. I also volunteered for a study with the Dermatology Department so they can watch what happens with me.   * I know all of that sitting around just made it awful for my vestibular system that needs me standing up in exercising. So I went back to physical therapy. But you know how that is they only authorized six meetings and then it takes 12 more weeks to get six more meetings. But I plan to stay and physical therapy until I feel that I gained my ground again. That means doing my homework which is some of my exercises and strengthening my legs however every time I get a sinus infection and even though I've had my flu shot pneumonia shot will I still get these awful sinus problems and I'm on a number of allergy treatments.   **I went in and found out that I do not have asthma and I do not have COPD! hooray hooray hooray! But sometimes I get short of breath. They tell me that I have pulmonary hypertension. Like I needed another formal diagnosis after my name. Does the person with the most win? Well I seem to be working towards it! But now I can honestly say that I don't have to be long to that study group which I had volunteered to be in and it turns out I don't have it after all so I still have my Amazon purchases going to that worthy support group to study because my friend has it. She has had asthma all her life and now she has COPD yet she has never smoked. So anyway they just said that I had it just as a way to waive their hand at me to go away and just listed as that but when I went and was tested formally in the booth they found that my lungs just don't breathe in at capacity. No other explanation. And so far no other explanation is coming. So I'm hoping that by exercising a little more that it will help me.   I'm now going around in a wheelchair because they told me to be careful not to get another blister so I've been really careful because the last two pair of shoes have giving me blisters. I will be getting a brand new Walker because the one I have the brakes are not working good and the pouch is ripped I really put it through the ringer but I am really careful now about my feet. When I had to have an MRI 2 find out if the infection in my heel went to the Bone well that was a wake-up call but all was well! Again I escaped the bullet! So this week I'm going to pick up a new pair of shoes they're double depth. Fingers crossed!   ** this month I'm going to order new glasses frames for my new prescription. My vision has been affected by the stroke. I have strabismus and nystagmus but it's mild and it's stable. But on any given day it acts up and I would say that it's moderate not severe but certainly not mild. The double vision comes and goes depending on where I'm at and who I am at the time I guess. So so I can color because I use one eye and I get very close to the paper and I can read my phone and I think now I can even use both my eyes together but not very often but over the past five years it's gotten a bit better the colors are better now at first they were all wrong try explaining that one.   * last year my mammogram had two spots on it that were suspicious and they told me this and I burst into tears. I apologized and blamed it on the stroke saying that the slightest thing can just make me lose my dignity please forgive me. The women came around me almost in a huddle almost shielding me and I said oh no this is big news that often is responded to with an emotional outburst and do not feel ashamed. But they told me I needed to come in in a few days so that I could get this looked into as quickly as possible. I was at a Cancer Center that is world renowned and so I knew I was in good hands. And my news at Christmas time was that the one spot had been some sort of shadowy thing nothing to even test and the other spot was tagged and biopsied and was a harmless thing that is Tagged so that it won't be bothered next time. So now it's next time and I think I may be braver I know that when I get the news that something's wrong it will always be a sting because of course why would it not. But I will always have the courage to go in annually.   ** so this year I did some things for myself color coloring is my hobby. I just got into it and I just never stopped. Now I have people asking me two color things out of the many books I have with perforated pages. Surprisingly and humbly I tell you that they have been framed pictures we're giving to me saying here's a photo of your picture. It brings tears to my eyes. One lady put a couple of my pictures in a collage with the Beautiful calligraphy Bible verse. Anyway it makes me happy and hopefully it makes them feel loved. What do people like they like my peacocks. And they like my fairies. Now I have a couple of books that I color just for me and those are like in my collection. I was a peacock for Halloween !  And if I do say so myself I took third place ! Not bad for just a feather in my hair  and a scarf and a fabulous fan !!  But now I've told you my secret ! But I don't have too much time to do this because my real hobby is     POKEMON!!! Oh you just can't believe that yes my son and I play this game he even bought me a new game system for my birthday this year along with the cutest little plush. I find that distractions is the key to my pain management and for my mental health finding just plain old-fashioned silliness fun is the best medicine for me!   ** I do have been trying to get some kind of reclining chair to elevate my feet but so far it's an insurance thing! They still look at me like I am the person that should be opening the door and just pop and down the stairs and jumping into a cab and going off to meet a friend for dinner. But I still have the same old stroke deficits that pop up every time I have an infection. I feel this week because I had been ill I had been complaining but no one was listening because my temperature was normal. But then my temperature was not normal and as I walk to the bathroom with someone beside me all of a sudden my leg gave out and I went down on my knees. She was holding the gate belt otherwise I know that I would have smacked my head. I am extremely careful when I don't feel well and I insist on precautions. Maybe that makes me a squeaky wheel but when I don't that's when stuff happens. Anyway they were able to call in antibiotics immediately with no other problems and I am very grateful for that so now today I was able to polish my own Nails my shakiness is down and I think that I'll be able to walk on my own without having to use my wheelchair.   The good eggs in with the bad. I have had many blessings this year and many frustrations. Thankfully frustrations have a short fuse and I don't remember them for long. One thing that happened this year is that my daughter called me. Finally. As many of you had read my daughter had disappeared and I was never quite sure why yet I understand completely. good eggs in with the bad. I have had many blessings this year and many frustrations. thankfully frustrations have a short fuse and I don't remember them for long. one thing that happened this year is that my daughter called me. Finally. As many of you had red my daughter had disappeared and I was never quite sure why yet I understand completely. there's a lot of pressure for a daughter to be a mother's caretaker. I'm glad that my daughter went out into the world and made a life for herself. I would not have wanted it any other way. I am grateful for the time that she spent assisting me in the beginning and that great transition. And I think that she has grown up a little bit more now and hopefully understands a little bit more now that she herself is a mother. And yet there is still a distance now. It's like you can never really gain back lost time and things with people seem to just change or is it just me?   My son and I are at constant. So it's not always 100% good and Lord knows we've had our problems but he's always there for me and I appreciate it. And I have appreciated it when he's honestly told me that he can't be there for me. And I want him do you know how proud I am of him 2 I'm glad he has an outside life of course. In fact I am so proud that he has traveled around the world in his work and his his research with cancer.   But honestly what I wouldn't give to turn back the clock I could just make a laundry list of things I miss because my kids grew up. McDonald's at any age I miss so very much. So it's so funny because when my son and I get together the first thing we do is go get a McDonald's! It's like a tradition! We always travel with a large soda tucked away in the dashboard. And we are now playing this video game stuff together and I must say that that has drawn us closer. I wish that I had spent more time when he was younger but it seem like I took him to stuff but I didn't participate oh I was working and I was doing this and that and the other. Can't do everything but anyway it's still fun to get out and do what I can and be who I am today. I still try to do what I can like put on some makeup and some nail polish. It's so funny how some people will say oh I've never seen you with makeup on and I'm thinking wow has it been that long that I could possibly meet somebody and know them for. Of time and they not know that I love to wear makeup. And then other people will say oh I've never seen you wear nail polish and then I'm thinking wow now that's just plain crazy because I wear nail polish all the time but again they don't see me off and maybe. So the one funny thing is that honest here I have not had a haircut in one year let me figure this out 1 year and 6 months. Now I've put all kinds of conditioning stuff and all kinds of grow your hair back stuff trying to get some hair and I just decided that cutting it was just getting it shorter and shorter it was okay but I miss my really long hair so now my hair is back but it falls out like crazy and it's okay I don't know it's just long and it got long it seems like where did the time go and then I see how long my hair is and I'm like oh yeah it has been another Longyear so I'm not sure what I'm going to do next. I think I just I want to grow it longer and longer and see what happens. I think it's kind of neat to have long hair so I also know of a place that will not charge me too much more to color it so maybe I'll even color it. So far I've just let the gray come in I just stopped worrying about it because I had other stuff to worry about and the gray came in and I thought I can't keep up with it I can't keep chasing it. Besides I'm not really interested in looking younger or younger sake I was before I think I just didn't want that gray hair to show just wanted to do something different I always had it short. Go back to my early 20 days when I had hair to my waist.   One of the things that I couldn't do was get the spinals for my pain relief and I was taking pain medicine every 4 hours which is making me fall asleep and so now I'm taking it every 6 hours I still fall asleep a lot but it's not so bad but I'm just wondering what's going to happen because I'm not going to be able to do the surgery until I get really over all of these infections and to tell you the truth I do remember how much it helped but I always get cold feet again over and over. Saying surgery makes me feel sick to my stomach.   I would say that I'm afraid of the pain of surgery! But of course that's ludicrous when you have this pain syndrome it's already ruining every conscious moment and taking away so much of a life that could be lived. So I think I'm going to have to be brave braver than I usually am no braver than I always am. I'm just learn how to do this. But today I'm just remembering about stroke stuff and there's a reason for that.     Somebody today told me and I've known her for quite a while and she told me that she had 2 t i a s and I listen to her story and I asked her what was she doing today did she have a neurologist and did she keep a regular doctors appointments and I wanted to tell her that there's no such thing as a mini stroke and there's no such thing as just a circulation problem. I wanted her to realize that maybe something needs to be looked at and maybe she should go but I didn't want her to be alarmed I just wanted to go see a doctor. And I said because things happen. And I know that people don't take it seriously unless there's paralysis. Anyway I see told me what some of her problems are there similar to mine and I told her about support group and how valuable it's been and I asked her about had you been online looking for info blah blah blah. All I wanted her to hear was go to your doctor.    And thank you sue for always sending me a little note sending me a little hope in a little love. And now I'm going to sit back and read some of your blogs and have a visit with you all because I've missed you and I've wondered about you and I've needed you and yet you know how it is but it is so nice to feel like I can come back and sit around the Round Table and have a chat again

SassyBetsy

SassyBetsy

 

here I go again

Im not sure how to write this--- do I take the high road ? Or the low road... ? I guess my present situation is the "BOTH" situation. My brother has been very sick . He ultimately has been diagnosed with liver cancer with no hope of effective treatment. It is terminal. He was given approx. 4 months to live. Guess where he is at ? YUP- my house. He is a bachelor, so no wife or kids to lean on. My older sister don't want him dying at her house and the rest of the family just shrugged their shoulders. I don't want the guy to feel unloved or uncared for. So I have him here until it gets to the point of nursing home necessity.  He was diagnosed with diabetes about 5 years ago -- was always active and healthy. Not overweight and he was a very active sportsman physical worker kinda guy. But here we are. His energy level is nil - . I'm happy enough to help him , but of course Dan who is in the nursing home - is smelling a rat. Is feeling like - HEY - Nancy can take care of him- but not me, her husband! So far he is understanding - sorta - . I understand his resentment ( and its not as overt as I may have made it sound).  Ive been doing ok with my depression and trying to ration my energy . But having another person to care for is more than I wanted to do. But DAMN no one gets to choose - yes I could just shrug to and say gee- I'd like to help , but ( insert excuse ). But Im just not that person. Poor boundaries some people say . But I guess when I meet my maker I wanna have errored on the side of have done to much rather than the gal who wrings her hands and says geez, I would, but I can't, so I won't.  But my brother earl is another eggshell guy . He has a history of tantrums ( thus bachelor) but he has always known his limits and would just leave when he felt anger. But now he can't leave. So far no issues - but Im pretty aware of his hot spots. My younger sister comes and looks in on him while Im at work for a hour or two. But boy when she don't have to she don't.  Frankly Im feeling a bit used by my family . I somehow ended up taking care of all his work issues ( there is a lot to do - FMLA and leave benefits- insurance etc. ) and just when I think I got something taken care of another issue pops up. And about 50% of his medical information and appts. we gotta travel 200 miles one way for apps and no matter what - that crap never gets coordinated. I made it clear to the family I DID NOT WANT THE LEGAL/ SCHEDULING / FINANCIAL -- But here I am .... I so smart - Ive been through it etc. etc. and honestly I am and I have - but that is their cue to just dump it on me.  Any how Im just bitchin- and I coulda just wrung my hands and ran away. But if everyone had " Boundries " no one would ever help anyone. I hear people preaching that -- and I get that but when you truly think on it what is that? If Jesus had boundries- -----  

nancyl

nancyl

 

Where did that month go?

They do say as you get older time goes faster but October flew by. I didn't go anywhere or do anything different, I have just lived life day by day as I usually do. So why do I feel as if I just lost a month? When I blogged in September I didn't have the date for the next operation, the thyroid operation, now I know it will be in March 2020, a long wait but the side effects of the brain surgery should be just a distant memory by then. And I should be a lot better too if I embark on an exercise program and improve my general fitness.   I have attended the usual number of funerals for October, three, had less days out than some years, no doctors appointments, only the six monthly session with the lymphoedema clinic. I had Trev and Alice come for a week in late September into early Octoberor but no family visits in the rest of October. In a way it has been a peaceful month and I think I needed that as I had started to worry about how much there was to do after the operation in July and worrying is not the ideal thing to do if you have to keep your blood pressure down.   Did I have fun in October? Not really but I did manage to keep most of my appointments and get back into a routine with the main components in place. The three months passed when I had to call on paramedics if I had a fall and I didn't had a fall so that was a bonus. I will gradually increase the amount of activity in each day. Daylight saving helps as the days are longer and I can fit in a nap early afternoon if I need one and still have time to do a little gardening before coming inside for the night.   We are still in drought in most of Australia and the last few days have been hazy with the smoke blowing down from bushfires further upstate. I think it is going to be a bad bushfire season. There is the promise of rain next week but our weather bureau seems to raise false hope with their predicted rain falls. I was brought up in a low rainfall area so am frugal with water usage. I do pray for a return of fertility to our inland areas, living in the inland towns of Yass and Narrandera when Ray was with Fisheries gave me a great admiration for farmers and their struggles with uncertainty due to climatic changes. While we city folk argue about whether Climate Change is real or not they get to deal with it.   The usual Spring illnesses affected my women friends so less get togethers than usual. The little lady I take to church on Sundays has had a few days in hospital but it was nothing serious just her medications needed adjusting. Sadly a contemporary of mine who I have known for forty years or so is on her last days with liver cancer but her family is asking for privacy so I haven't visited her in hospital. I hope she doesn't think her friends have deserted her. I am always dubious about the family deciding "no visitors" as I know how much I appreciate visitors when I am in hospital myself. Maybe that will be different when I  am dying, who knows?   November is a busy month, the last of the Spring cleaning followed by the first of the end-of-year meetings and the first of the pre-Christmas parties. I am going to Broken Hill before the month is over, will book flights this week. Trev is always glad to see me. Broken Hill has already had some dust storms so he will wipe down the cupboards etc in the caravan before I get there. I haven't been to Shirley's for a couple of months but she has been busy too with a move expected mid January. She is going in to Aged Care ministry and moving a couple of suburbs over as the house she lives in is attached to the Corps she works in now. Life gets complicated doesn't it?   And so it is a case of taking life one day at a time as usual, rejoicing in the good, accepting the bad. Planning for the future isn't something that happens much now but I am always optimistic, always looking for good things to happen. Next year there is a cruise in my plans. So that is hopefully the fun event to look forward to.        

swilkinson

swilkinson

 

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

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