Jump to content



 
  •  
     

    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.  

     

Blogs

Featured Entries

  • HostSue

    Living on angel time.

    By HostSue

    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.    
    • 10 comments
    • 167 views
 

I love life with all its lessons which is making my life so much meaningful & fun

As you all know by now I enjoy & love my life including all lessons & blessings that come my way. Recently we reconnected with our spiritual group which I was active before while taking kido to his indian languge classes & vedic hinduisim classes where they were learning  about two epics Ramayana & Mahabharata of India. where one epic taught them about how to be noble human being so what we should strive to become by following God ramas footsteps,  & other epic taught them what we should not do & in one of the epic lord answered student all questions we encounter in our life journey where you question all those deep questions of the life.   So anyways after kido grown up  & we had lost touch with this  elite group which are full of learned intellectuals & now accidentally we reconnected again & I feel my life has become so much richer due to interactions with highly intellectual people. I feel so blessed to be surrounded by some classy people.  learned something so  interesting yesterday which wanted to write down so that I don't forget in flurries of living life. one of the interesting thing host talked about is how to  worship God. & one of the example used was like how river forged their path & go through some difficult terrain & pave the way & finally merges into ocean by shedding all their identity in process of finally merging into ocean.  that's how we should be worshiping God.  I know I still need to work on my ego & shed that. I realized I am blessed & can't take any credits for anything in life. Though I am so thankful for people, books & everything & everybody who has en lighted my life,  for that I send big thanks & love to the universe.   Asha  

achandra

achandra

 

It is Done.

William passed yesterday 9-18-18 at 1:06PM.  William had been in hospice for 1 month.   This has been the longest month of my life.  I am so relieved that the vigil is finally over.  Here it is 2:40AM and I am up.  I am so used to getting up and checking on William. I want to thank all of you for being there for me. I want to share that the stroke board has been a lifesaver for me since William's stroke 10 years ago. I would suggest that anyone who needs hospice utilize it.  I thought that I was getting hospice in place early and I used it only for a month.  They provide a wonderful service.  They enabled me to keep William at home and let him die peacefully at home.  When I needed more help they gave me more help.  I started with help 3 times a week and ended up with help twice a day , every day. This month has been a vigil that I am glad is over.  When William stopped eating and drinking, it became a matter of time. I have wonderful friends who live around me and were able to support me through this time.  I was able to call upon them to be with me when I was afraid to be by myself.  I do encourage you to reach out for help when you need to.  Do not make yourself travel the journey by yourself. I know that many caregivers have traveled this long road with me.  What amazes me is the accolades that I get from everybody about the way that I cared for William.  I am called a Saint, an amazing person.....but I know so many from here that have done the same. So many of us have devoted our lives to our loved ones.   William's death brought closure to his estranged children.  They were able to see him in his last days.  Miracle of miracles who was coherent and able to speak with them.  He was able to see his ex-wife.  Life is amazing. Now onto the next chapter in my life.  What is going to happen? I went out to dinner with 3 of my friends last night.  It was so good to get out of the house.  Friends are wonderful.  I will be having lunch with another bunch of friends today.  My old YMCA bunch.  I have my trips to California to look forward to in November.  The quilt festival in November. I just got off the phone with William's cousin.  It was nice to reminisce.  I just want to thank everyone for their support.  This board has been a Godsend to me.  Thank you.    

ruthwilliam

ruthwilliam

 

PAM'S PAIN PRECEPTS

PAM'S PAIN PRECEPTS 1.  Never touch my leg. It burns next to the eternal yule log. I have been branded by the touch of others. But with permission all is well.   2.  I feel stabbed in my leg, calf or foot. I walk slow because it seems like butcher knife follows me stabbing me in mý calf.   3. Wake me for pain pills or  prepare for me to wail for for hours until the next dose.   4.  Sometimes I just need to color all night. My symptoms hurt.   5.    Sometimes the covers are too heavy and I call out for someone to remove them. My leg burns or electrical zaps consumes it.   6.  I will want to get out of my pants as soon as I can. I love clothes but now I only harem pants or super soft material.   7. I will do PT according to what my body can tolerate tomorrow not today. My pain does not hurt much now but later I will pay.    8.  Allow me to sleep until the pain subsides. Just save my food.   9.  I need my pills on time or early if I previously too an earlier dose.   10. I am probably addicted to these pain pills but I have constantly been in pain since my stroke. This is chronic pain but complex regional pain syndrome is more than intermittent pain.  It is CONSTANT.

SassyBetsy

SassyBetsy

 

A bed sore

It has been three weeks.   I cannot believe it!   A bed sore!   William has never had a bed sore.  But this just lying on the bed for 3 weeks has done it.  I have been changing the underpad often.  It is difficult to change by myself.  I have called hospice and informed them that I will need help twice a day to change and clean him.  They have agreed to do that.  It is 3:28AM .   I have been up since 2AM.  I got the kitchen all cleaned and cleaned the floor of the living room.  William is usually up this time of morning.  Thankfully he is sleeping peacefully.  When I changed the underpad.   He  asked for a sip of water.  He had a couple of swallows. I am just praying that he will go peacefully before his skin deteriorates more.  The CNA comes and bathes him and I have to be the one that is looking for that.  It started out as a skin discoloration.  I have put a pillow under his bottom to shift his weight. This morning his eldest son will be coming out to say good bye.  They have been estranged for over 25 years.  I do not know how responsive William will be.  But, this will be closure for his son.   I hope that perhaps this is what William has been hanging on for.   The chaplain was concerned that perhaps  I am not ready.  But,  I do feel that this will be a relief.  I hate to see him just lying there.  Yesterday and the day before.  He kept asking to be let out of this bed.  I tried to explain that I could not safely transfer him.  I did feel so bad.  In the past  I would move him from the bed. It is strange the nurse wanted to check his heels for bed sores on her last visit.  But, she did not check his bottom.  I remember my son telling me to always check his backside for bedsores.  He said that nobody really looks there. William is sleeping so peacefully. I am so used to waking up and checking on William.  I wonder if perhaps I will be able to sleep through the entire night without waking up to check on William.  Well, we shall see. I did buy tickets to go to California over the Thanksgiving holiday.  I will spend the holiday with my son.  It is so strange to make plans again.  I am so used to staying at home and taking care of William and the dogs.  My friends will take care of my dogs for me.  It will be strange to be on a plane again.  Imagine it has been 10 years since I last traveled. I wonder if my minimalist idea will really hold.  I plan to shedding a lot of stuff for my move.  But that will be in year or so.  It is so strange to think of life in the future. Two days ago the hospice nurse thought that William would last thru the night.  But,  he is still here with me.  Everyday,,,I wonder.  He has lost so much weight and looks gaunt.  This is a fellow that has always had trouble with his weight. A friend of mine told me that I should cross fold a sheet and lay it under him.  This would help me to turn him.  I will do that when I have the nurse come in today. This morning he has been compliant and let me turn him by myself.  Maybe he is getting too tired to fight me.  I have scheduled a nurse to come out tomorrow and a CNA.  I will call them again on Monday to make sure that they have the same thing set up for the week.  Who knows.   I may still need all of that help.  

ruthwilliam

ruthwilliam

 

The end is near.

This is a difficult time.  I thought that I was getting hospice involved early.  But, William declined rapidly.  My best guess is that William may pass today or very soon.  I was so afraid that I would get up and find William gone.  I kept getting up every hour.   I am not doing my ritual gym thing this morning.  I want to be close by.  He is calm and peaceful.  He is not agitated like he has been. I actually did go to the gym..  Just later. This will be a long and difficult vigil.  William is now resting peacefully.   He complained that his foot hurt him.  I offered him some pain medication which he refused. I am blessed with wonderful friends.  I have had calls this morning from friends that have offered to sit with William and give me a break.   I will take them up on that.  I need to get to the gym and work off some of this nervous energy.  But, I have the hospice nurse coming out.  I do not know when she will come.  I sent her a text.   I need her help in changing the wet underpad.  Hospice has been really wonderful.   I am able to keep William at home with their help.  He has been in and out of sleep all last night.  I will now have William in Diapers.  This will hopefully make it easier on me to keep William clean. The bed control is not working.  I will have to call hospice and have them send somebody out to fix the control.  William ate 3 teaspoonfuls of applesauce this morning.   He did not know what it was.   I was able to take the dogs out for their little morning walk.   I will be waiting around for the hospice med drop off.  Last time they said it was from 8:30 AM to 10AM.   I will make it to the gym after 10AM.  then I have a friend coming out at 3PM.  I am spending more time sitting next to William.   I am not going upstairs and sewing.  I just don't have the concentration to do that. Well, William rallied and was more alert and did not have that funny breathing the next day.  This waiting is not a fun process, but just part of life. I really hate deaths at this time of year.  Thanksgiving and Christmas follow..   I am trying to think of what I plan on doing.  It has been just the two of us for long.  I may travel to my son's, tickets are not very expensive now.  But, I have 3 dogs.  Friends will take care of them.  But, I still hate to leave them.   I still need to ponder that idea. I started this blog two days ago.  Wm rallied and is still hanging in here.  It is 2AM Sat. 9-8-18.  He is up and responsive.  Calm and peaceful.  Hospice sent somebody and they fixed the bed.  It was actually my fault.  The plug is connected to a wall switch.  I had the switch in the off position.  The guy said that the outlet was not working.  But, I didn't tell him.  It actually is working, I just had it in the wrong position.  My friend gave William such a wonderful gift.  She came out to sing for him.  What a marvelous voice she has.  She sang hymns to him.  It was beautiful.  The gift of music is wonderful that she shared it with us. Today the CNA will come out to help me bathe William.   I will head to the gym early and be home to await the day.  It is so nice to have hospice to call when I need help.  I have been told again and again that is amazing what a job I have done with William for so many years.   I know that other caretakers have done the same.  But,  from the comments,  it is not the norm.  They have all said that William is so blessed to have been taken care of so well all of these years.  I have been privileged to have been able to do what I have done.  Let me post this now.   

ruthwilliam

ruthwilliam

 

Manic Monday

Well Monday I go back to work for the first time in 9 years. As we all know, living on Social Security and single, is very difficult. It is so expensive to live in New Jersey, or any where for that matter. Don't get my wrong, I'm thankful for what I do get but it's so tight. I know when I finish with orientation, two weeks 70 hrs., I'll go to part-time so I'll have down time. I've been trying to stay busy everyday to get adjusted to staying focused and that hasn't really gone as I  hoped. I'm good for a few days but after that I completely shut down.   I know I sabotage myself by pushing back on things, I know I do it and still I get worried. My head, on today it has been raining, feels like you've been on a tire swing and spun super fast and now you're trying to walk. I often call it my A-HA walk. in the video he bounces back and forth on walls. I know I just have to do my best and I know once my air ducts and/or AC unit cleaned or new, I'll feel better. Breathing in mold, as I have for the past 4 years causes chronic fatigue ( on top of the fatigue I already have).. I'll put my best foot forward.   🤞🏻

ksmith

ksmith

 

Living on angel time.

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.    

HostSue

HostSue

 

Another Late Night With My Thoughts and Stuff

So here I am. It's 11:23pm and I'm fidgety, awake, and drowning in needless thought. I'm in a state of anxiety for what I feel is no reason. I can't sit or lay still. I am weirdly hungry like ravenous and I just want to eat again and again...but nothing satisfies me. I lay my head down on my pillow and then pick it up then lay it down again over and over trying to find a "comfortable" spot. So now I'm sitting up. LOL sorry if this is boring but I just need to get anxious movement and thought out of me so I thought blogging would do the trick. It will not in the least hurt my feelings if you click out of my ramblings. Just a warning lol. I am also cold and then hot...back and forth...sometimes all my cover on and it feels like even my bones are cold. So I thought about taking a hot bath. Too much trouble says my head. Noises tonight have been particularly irritating...like my step moms cane tapping the floor as she walks or even my dads cough to clear his throat (he has lung cancer...what is wrong with me). I feel an uneasiness. Hmmm where. My fingers, my stomach, my feet, of course my head, my ears, my eyes, my scalp and hair, my legs and arms all feel strange. My throat and esophagus yep feel weird. I just want to be asleep. I have been looking at this weighted blanket it's supposed to help with anxiety. I just might try to figure a way to get one. I've been reading everyone's posts and trying to keep myself busy mind and body. That way I'm choosing what I do and think...make sense? I am going to look for some more sleep and meditation music maybe that will help. Sigh I know I should be thinking positive, being grateful, putting worry away, increasing my inner vibration, learning acceptance, etc. etc. I'll tell you though, anxiety (clinical General Anxiety Disorder) can get in the way of all that. I hear comments from those around me like "just stop worrying" "you can't think like that" "you just need to get out of the house and do more stuff with people" "we all get anxiety sometimes it'll go away in a few minutes". Hello...walk in my shoes tonight and then we can talk. It doesn't help me. I'm not whining about it I just am being truthful. It is what it is but it sure gets on my nerves.  Ha I made a funny. Ok this is TMI but even when I pee it's like a nervous pee. Just realized that lol. So what are any of your suggestions if you suffer from anxiety along with other head stuff?

tmciriani

tmciriani

 

tidbits of my life

I am pretty much go with flow personality, & had never known some of the other good qualities about me which I was not sure of before,   & now learning about me every day & always think damn my husband is so lucky to be married to me 😄 maybe I should also tell him that. Anyways what's new with my life recently our kido had severe allergic reaction to soy protein powder he had which he had after his exercise. usally at home he takes whey protein, since he was at college & didn't have that, he decided to take his friends soy protein & he had bad allergic reaction, he calls us telling us to get benedryl  & he will be fine after he takes shower & med. after e came home, one look at him & I told him lets go to ER after you take benedryl. he had hives on his body & eyes were all swollen. luckily his throat was fine. So after few hours at ER & some miraculous med we came home. l am glad it wasn't worse off than what it was, & it became good teaching moment for all of us. I keep on telling him get your vitamins from food & not from this processed powder we don't have any control over it, finally it sunk in him that MOM is RIGHT. Anyway going to ER make me realize our son has become mature adult, he handled everything by himself, we were just concerned parents sitting on sidelines & feeling proud of our future doctor who will learn to become compassionate by being patient himself. What else is new in my life, recently we decided to convert out half bath to full bath, so that  our both floors can become livable & I don't have to go upstairs for any reason in case I end up having surgery for my torn miniscus.  I realized I really underestimate myself  in lot  of things. I  never enjoy designing process cause it is hard for me to imagine how things will look with particular design. but I do realize I do have good taste in things, & now that our bathroom remodeling is done.  I love it the way it turned out. So another lesson learnt, I am PERFECT   the way I am &  whoever people are in my life willingly are  lucky to have me in their life 😄   Asha    

achandra

achandra

 

I knew I smelled something

So when things started to look okay, working isn’t a fact I’m looking forward for but it is a must, and I was able to get back on track, the reality of my nose finally made sense. Let me explain: I often said I smelled ‘cigarette smoke’ every time my air conditioner turned on. I said smoke because I couldn’t make a comparison to anything else.  I bought cleaning supplies to clean my air conditioner unit with my father. I had to wait until a cool day and now is the time. We opened the closet door to my air conditioner air compressor thingy, we saw a large puddle of water on the floor. My water pan, for the moisture, was always overflowing.  There is a flap that is supposed to be on the unit where you insert the filters mine wasn’t there. For the past almost every years... I didn’t know so all the moisture from outside is coming directly to my unit.  So the smoke smell I was always smelling is in fact MOLD. I do have two air purifies and they work nonstop. So tomorrow I have someone coming out to give me an estimate for either cleaning or replacement. UGH... When it rains it pours. Just venting... It’s all good. It is what it is. I just came back from a stroke support group luncheon with three other groups (Caregivers, TBI, stroke survivors) I feel ok and tomorrow after I meet with the repair man I have a meeting for tax freezing, for those on disability. That means you pay a set so if it goes up I pay it but I get the difference back at the end of the year then to meditation in the afternoon to end my day. Namaste

ksmith

ksmith

 

Update on Life

Things are finally calming down after my brother's death. Still no full answers yet from autopsy but hopefully not too long now. Tomorrow his daughter gives birth to his 3rd grandchild (a boy). It may freshen some raw feelings but all in all it will be a really wonderful day. My dad is actually doing really great during his radiation and chemotherapy...no sickness or really bad side effects. He is just over half way through. I'm so glad he's doing well.   Me...I am finally calming a bit from when I wrote last time. I have seen all my Dr.s in the past month...Neurologist, Psychiatrist, and PCP. The lump on my neck is not seen on the ultrasound so my Dr. says that is good and not to worry. My Neurologist says I am doing well...She acknowledged the Cerebellar Cognitive Affective Syndrome and that Neurology would not treat it because there is not really a cure but my Psychiatrist and Psychologist would treat my side effects. My Psychiatrist had the privilege of seeing my anxiety attack for the first time in his office. Caused by a stroke of lightening and a very loud clap of thunder at the same time. It happened in a matter of seconds and he just was quiet and let me calm down before asking if I experienced this often. YES ALL THE TIME. He left the room and came back giving me a bottle of Nuedexta. He said when this works it works really well let me know in 2 weeks if you can tolerate it and if so then you will start taking these 2x a day. It will not help certain issues you are having but if it helps and is the right path then it will make a significant impact. The rest we will work on...but 1st this. It was a trial bottle of 13 pills. I am pretty sure I could feel a difference but then realized it is over 1000 per month. Crazy...undoable. So I contacted the manufacturer after about 7-8 days and found out they do have a patient assistance program. I am pretty sure I will receive the medication free. I have since finished my trial bottle and the Dr. office informed me that I had gotten the last sample but they are working on getting more. So for now I am not taking them. Still pretty bad emotional lability but calmer now...no more hallucinations, no panic attack in a few days. Just trying to stay calm.   Tonight my ex Narcissist boyfriend sent me a text message asking how I am. This is a common pattern for him. Not sure what he wants this time. I keep emotional distance...and just look and think forward.

tmciriani

tmciriani

 

Connecting to Others

So I want to make friends here again. I find people to play cards with to there are many personalities, many stages of dementia, mental illness. On the day a psychologist arrives, they wheel them in. I think to myself, this puts all ill folks together but a cna told me that different areas get the crazy ones because it would be too hard to care for 12 of them,so they spread it out. ok so that is why. But I went out of my room, shared my coloring stuff, cards,chinese food.And these folks were a toxic trio times three. One man buys pizzas for staff and select friends. pizza left me with upset stomach watching them argue, fuss, and leave one man out, whom I befriended...immediately that left me out.   I am glad I showed her kindness. I tried to be nice to all. Watching this man stir the pot left me ill. Then the women.....pitting one against the other,jealousies, petty stuff. Like high school. childishness. Are we not adults with a shared painful history.    I said I would go out and try again. After another day in common room under florescent lights,loud big screen, and over the top drama....woman in tears over some argument......left...   ....more drama....   I am back in my room. happy to be alone. I went out there but I found it exhausting rather than the fun days I played bingo and enjoyed it. Now I got drawn in. hurt. yet detached enough to walk away knowing that these are not people I will continue to visit or go out in common room. I would rather color or watch movies.   I told one lady, I do not even know the other lady so her snippy stuff is before I got here. The lady said does not matter,she is that way to all. I said of course. And I asked why she continued to hang out with people who frankly act like they hate her....she answered she was stilloo an inherent right. What kind of chaotic circle of hell was I visiting??   I took my toys and went home. After asking her if she needed any of the colored pencils she was borrowing. She said she had finished. We went our separate ways to bed.    Later that night I was asleep in the bathroom.....no one checked on me.  So the night shift cna was a girl who has taken care of me before. She  took good care of me and told me gossip that these new staff had not kept the patients cleaned up. I said well this man bought pizza for them and his select crowd. she said they failed to change patients so next shift worked harder. My deal is I fall asleep in the chair. I not ready to sleep at midnight. And no staff looks for me for pain meds...just   for glucose chek@    

SassyBetsy

SassyBetsy

 

Our next step - Hospice

Well, I finally made the decision to talk to hospice.  William has been declining.  He sleeps alot and eats very little.  He has alot of confusion and sees people that are not there.    The hospice agency was great.  They have suggested that I get a hospital bed and set it up in the living room.  I will be getting rid of the couch and recliner.   They provide all of his meds, bed liners, vinyl gloves, wipes, lots of things.   I will get a nurse once a week and CNA 3 times a week to bathe William.  A chaplain will visit him weekly, and they have volunteers that will come and sit with him if I have to go out.  They have respite care for the caregiver  (5 days each month).  I fortunately got all of our paperwork in order.  Medical power of attorney and medical directive for physicians.   Today, William has been up and cognizant most of the day.  He even ate a banana, applesauce and a little sausage patty.  Not much appetite but since he hasn't eaten for 2 days this is good. We shall see how things work out.  It has been ten years since his stroke and his decline has been slow but keeps progressing. Who knows what the next steps will be?  Quality of life needs to be an issue.  William has been housebound for over a year.  Hospice could be used for a long time.  They just renew after 6 months.  This could happen with stroke patients.  Ruth

ruthwilliam

ruthwilliam

 

Crazy Lady seeks advice

Ok - input appreciated- especially those who have followed me for years - literally !. Its taken a long time for me to settle down and into my "stroke widow" role. I was pretty young when it happened to Dan and I had ambitions of my own- all flushed when Dan stroked. So after the 4 years of caring for Dan ended with me in the mental institution and him in a nursing home - I am debating bringing him home. Why - Im doing virtually all his cares and still paying the bill for his care. Im finding, I may, in a few years down the line end up in financial issues if I continue to payout for his care, and even though I have a great boss I do not earn but barley a 1/3 of my previous - before stroke salary. With all the constant care and paying attention needed I could never commit to a job like I had previous . The job I have now accommodates , don't pay well, but is very accommodating. And I feel the actual want to care for him again in his our home. I feel most of the "RUN" has been taken out of me. Im not running as much , given up the alter life I tried to have.  Of course this will involve some planning and work , by no means is this gonna happen anytime soon. The home I have now is not handicap accessible , can not do long term care in it. So I would have to look at homes AGAIN --again history is repeating itself. So Im playing with the idea. Have not and will not tell Dan anything as I have not made a solid decision. I kinda feel like I don't want Dans story my story or OUR story to end in the nursing home YET. I recognise I may be repeating a pattern, but the pattern of everyday Nancy to the home to work to the home --- then to my house to sleep and repeat and paying a institution to do what I do isn't working either.... So for fun people digest this..... Yesterday the home had changed Dans bedding - YAH !!! so I notice the blanket on the  one side the visible is hanging really low , so I figured I would pull his bed out and even out the blanket. I pull out the bed and his blanket on that side has like 2 feet on the floor.... Im like WTF ?? so they took the rectangular blanket put it on the bed wrong ( side ways) and figured the extra would just go away... I laughed so hard.. Went and talked to his nurse supervisor and was like - I don't know who special ed is that made that bed , but man if you can't do the most basic simple and easy job in the whole place - I pity the residents.  I wasn't adversarial and not even angry - just the  daily shenanigans of the home is so frustrating. They are having so much trouble as are all the homes hiring that a "warm body" is pretty much the only qualification. I just don't know that the home is the best for Dan at this point. Im sure he'll end up in a home again, but I guess Im willing to try again... but the decision is not made and a lot would need to happen if thats the decision. Im not in a hurry --- and yes to my long time stroke net friends please chime in tell me what you think. You know my history, you know ME and you know the STROKE ISSUES we all deal with daily.---- Nancy

nancyl

nancyl

 

An update and a heavy heart...

So much has happened I don't know where to begin.   My brother was buried yesterday and it was the hardest thing for my family that I can remember. I will tell you that man was he loved...by so many. The visitation and funeral were full...family, friends, business acquaintances, co-workers, and a multitude of others. All of whom grieved heavily for my brother. Everyone so kind to everyone in our family and sharing their memories and offering to be there for whatever we needed. I feel so blessed and know my brother was and was so loved.    It has been a difficult tragedy to bear. There are questions...concerns. There is an ex girlfriend and her brother that have affected things. Though they had been apart for about a year something caused them to be in contact within the last 3 weeks. It wasn't anything good. Her brother showed up at my brother's house and my brother must have felt real reason to call the police. Troy wasn't the kind of guy to depend on authorities when an issue arose he met it head on and took care of it. No one bothers him. He is calm and quiet but he knows his rights and everyone around has always respected his "space". It had to be something bigger for him to involve the police. When my brother passed it was 3-4 days before he was found. He didn't show up at work which was highly unlike him. Troy was a workaholic. He NEVER missed. His co-workers went to his house and the back door was wide open but Troy would not answer when called. They didn't go in...They called the police. He was found in his bathroom on the floor in a pool of blood in a state of rigormortous and decomposition. His head at the opening of his closet and the remainder of his body in front of the bathroom vanity. His house was taped off and processed and his body was sent to the medical examiner's in Nashville for autopsy. His co-workers said they only had a number to his ex girlfriend and she was called. She came to the house and said Troy had no family just her. When it was discovered that it was my brother my sister was called and came right away. The girl said she knew nothing of my sister or anyone else. My sister told the Sheriff she was not family and was not welcome on the property and she was told to leave and not to come back. This infuriated her. The locks were all changed and his home was patrolled off and on through the night. In the morning my mom, sister, and his daughter came to the home and this girl had broken in an was going through the house. My mom found her looking under his mattress. They walked out without her seeing them and called the police. They arrived and knocked on the door and she answered and invited them in like she lived there. She was arrested for felony trespassing, felony breaking an entering, and after searching her car, purse and self...felony theft. She had stolen many of my brother's things and was filling her car up, purse, and body. EDIT: She also was staging his home as though she lived there. She had placed framed pictures of her and Troy around the house. They weren't there the day before because I was there and there were no pictures of her period anywhere. END EDIT. Later that night a male called my nephews phone and said "There better not be anyone at Troy's house the next day."- he thought he was talking to my brother in law (it was this girl's brother). She also showed up at my brother's visitation on Friday night. She had colored her hair and her and others in her car tried to get in. She was told to leave by the director and was told that she was not welcome and the family did not want her there and not to come back. If she did not leave she would be arrested...So She left. We never saw her yesterday but were on edge that she may show up again. So it's been weird and we are all left with questions. He is suspected of having a heart attack but the autopsy will take a bit of time for more answers.   My dad did well earlier this week adding chemo to his treatment. His doctors have suspended all treatment until Monday due to my brother's death. He is taking this hard though he tries very hard to not show it. My mom is a rock...She always has been. My niece (Troy's daughter) signed executer of estate to my mother because she is still so young and doesn't know what to do and also because she is very pregnant with her 3rd child and due anytime. She has stood like a rock but it is breaking her inside. He was her first born. You shouldn't have to bury your children.   Me...well I have been having problems for some time now and this has just multiplied it by 100. I went to my Neurologist the week before last and to my Psychiatrist this past Thursday. 3 seconds after he walked into the room a lightening bolt hit so close and so loud that I almost ended up in the floor. I went into an immediate bad panic attack. Crying was uncontrollable. The next hour was filled with tears, fears...It felt like a nervous breakdown (I'm not sure I really know what that feels like but that's what I thought). He told me that my Neurologist had already called him about me and she acknowledged the CCAS and wanted to fill him in before I came Thursday. I was surprised. It made my crying worse. He talked to me about my disability because he knows I am harboring a lot of stress over it and asked me what is frightening me (I just got a hearing date not long ago). I told him I'm terrified of going back to work because I know I will face stress everyday that I can not handle anymore. I'm afraid it will be turned down again...I'm terrified of exploding from the anxiety. He told me he did not want me to worry about disability that I would not be able to work again. I cried even more. He gave me Nuedexta and was glad I had lost it in his office so he could see. He is hoping this will help and that some of my anxiety is coming from PBA. It has not been a kind drug so far. I am so nauseous, tired and seems like a fre other things. So we'll see.   Thanks for listening and please send a prayer for my family to help them and me through this heavy time. Thank all of you so much! I feel like many of you are an extension of my family and I love you.

tmciriani

tmciriani

 

Trying not to hold onto resentment

Just plodding along, hoping for better days. I have a head cold so feeling down and this is another of those times when I want to scream: "Where is the person who is supposed to take care of me?". It is hard not to feel resentment after looking after Ray for so many years. I seem to have few days like this in winter every year. Yes, it is hard to be on my own when I am feeling sad and shaky but there are no money back guarantees in life and I have to remember that. I can please myself when I go to bed, when I get up and what and when I eat. But I still have to get used to the fact that freedom and loneliness go together.   There is always plenty to do this time of the year. My six week course on Better Health Management takes up Tuesday morning, and the rest of the week seems to fly by. I haven't learned anything new while doing the course but it has reminded me that now I need to take care of myself  the way I used to look after Ray. Not an easy lesson to put into practice. The long dry period has affected the garden and it looks more like late summer than early Spring with plants showing signs of stress and the lawn drying out. I do water the pot plants as needed but the August winds are drying them out so they look dessicated, not holding out much hope for Spring bloomings.   Our Lions Club has been raising money to go to farmers out West to buy stock feed. We are in the middle of a long term drought and country people have run out of water. I  can't watching the news as it all seems like gloom and doom, dying sheep in dust bowl conditions but it does affect me in other ways too as I have friends who are on the land. Sometimes it is a very hard life for them. I haven't heard from some of them for a while but if you are hand feeding stock there is not a lot of time  for anything else. I understand that.   I just had a phone call from my sister-in-law in Queensland, she is worried about feed for the few cows and horses she has on agistment that she has on her acres. She have always had a farm of sorts and worked outside the property as well as many wives do. At over 70 she is starting to find she doesn't have the strength or the energy she used to have. If she and my husband's brother were to leave there they would find life very different. She has three cats and three dogs as well all used to the country way of life.   I had a phone call from her daughter last weekend. I call Kim my best neice as she visited me when I was in hospital after the operation. She lives just out of Sydney. Unfortunately the opposite side of Sydney to where I live. She is worried about her Mum, thinks the farming lifestyle is too much for her. I guess my kids worry about me too, we older folk are too fond of our independence in their eyes. I want to be independent for as long as I can but know that like the old ladies I look out for that will only last while I am well.   Ageing is a worry and more so if we live alone. I don't know what the solution is, the government wants us to stay in our own homes for as long as possible, but as we get older we get frailer. At the moment I don't need services but who knows what the future holds? The last lot of tests showed no new problems but one of the future ones might. It certainly seemed easier when I had a partner to tell my troubles to. Now I find I exchange thoughts with some of my widowed friends who are in a similar situation.   Whether we care for someone or are the one needing care our future is undetermineable and often feels out of our control. Which is why we need to take life day by day, getting out of each day what happiness we can. I do try to live life like that. I have certainly lived an interesting life, if a trying one at times. I rather thought I had earned some peace but I guess we all think we deserve better. Roll on Spring.    

HostSue

HostSue

 

fast no more

Yesterday I finally had my ablation on my heart to stop the rapid heart beat. I wasn't nervous for my cousin, who is a cardiac nurse and also had this done, walked me through everything. It didn't hit me that I remember them adding the adrenalin to make my heart race so they could find out where the 'road block' was. Basically,  you have two tracks that the electrical currents  in your heart go around that keep your heart function.  So Imagine you have two tracks above each other but the one with that contains the faster of the current (: if you get excited or caffeine your heart beats faster and you also have a slow lane that keeps the balance- ) well one of mine didn't have a complete track because one of the tracks had extra muscle that made the faster currents speed faster in half the space.   When the current would get trapped in the smaller loo[p, my hear rate would jump to 240+ beats per min. SOOO.. When I felt them making my hear to go fast, my jaw started to hurt, I began to sweat , same as always, but when it stopped I thought they  stopped the medicine for I didn't feel the usual chest pains but it just stopped beating fast. That was the time when he performed the procedure and fixed the problem.. it is amazing.   The down side is they went into both side of my groin so pain, no driving, no swimming, no lifting.. To most people that might sound like a day off but no driving to my Aunts house to swim in her pool.. But I can drink coffee.. but I'm still scared but he ( the Dr) said it was textbook so no issues. Same day.. Long day. My parents and I left my house at 4:30a for the 90 min drive.. put on to prep at 7:15a wheeled into the OR 8am   finished at 12pm.. post op full bedrest until 4:00pm.. leave hospital 4:30pm (Philadelphia Rush Hour) made it home by 6:45p.. My son, 15, stayed home with the cats.. don't blame him..  I slept partially seated for my pelvic area was so sore.. Better today.. Apparently I emailed people while still drugged lol  

ksmith

ksmith

 

Another Blog

I spent 5 days in hospital for cellulitis in my good left leg brought on by lymphedema and other swelling stuff.  They do not have oxymorphone in hospital so I took oxycontin. It did not work as well plus they did not wake me up around the clock for my meds even though the doc told the nurses. I suffered. But I got treatment. Then released to thehome. Only to find they discontinued all meds after 3 day absence. So think this would be easy to get its all back again? They did not order my meds and they ran out. And no one could fix the code the pharmacy needed except my doctor that was MIA. Then all fixed by a traveling nurse who took charge.   So I have to heal. I hurt. I have fluid  now congestive heart failure. I got through it. Healing   Pain management clinic is only for clinic time now.wow. Last time the fellows were so nice but hey things change.    I just ask for help. Sheesh Always CPS. and I try to get rest. I felt alone but then son is busy and ill. I was just me. I feel ill still but I enjoy painfree times. coloring.

SassyBetsy

SassyBetsy

 

Feeling Cra Cra praying for Thursday to come

Lemme just get all the emotions out at once. I've been pretty terrible lately. It is definitely time to see my shrink. Thank the Lord its Thursday. Let me go through my new range of crazy. I'm depressed, my anxiety gets so high I feel like I will burst, panic attacks almost daily, seeing things, hearing things, scared because I don't know if I am seeing things or hearing things, sense of utter doom Bad Bad Bad, the crickets made me have a panic attack, I keep hearing thunder rumbles but feel to my bones that something horrible is coming...plus I'm not even sure I actually hear thunder but it's there, I have been barricaded in my room 75% of the time lately, sleeping as much as I can, I don't want to be awake, chronic headaches, neck pain...Oh yeah I have that mass on the side of my neck, crying, crying, crying, hyperventilating, completely paranoid, obsessed with trying to find answers on the internet which makes it worse, feel like throwing up a lot, obsessively sanitizing, obsessive in general, oh did I say terrified at times? I think there is more but I'm too tired to write it. So what has happened? Ok so I found out my disability hearing is October 25th good right? My dad was diagnosed with stage 1 non small cell adenocarcinoma of the lungs 'm about a month ago. He has been doing radiation for 2 weeks now and started chemo today. He has a 85% cure rate...another pretty positive note. My extremely narcissist ex boyfriend of 10 years that I left a year ago because he replaced me with a 24 year old 30 years his junior has contacted me twice in the past month. My stepmom is neurotic and a clean hoarder ( I still live with my dad and stepmom for now). I found out today that my dad should be putting the toilet seat down and flushing twice when he uses the restroom. He NEVER flushes pee. He is diabetic, has COPD but in the last month has quit smoking and drinking, has beginning stage kidney disease and now has cancer and has to have poison given to him...radiation M-F...chemo every Monday. He checks his sugar, takes insulin, all without applying alcohol to any place a needle goes and hasn't changed his Lancet in forever. I've been sanitizing as much of where my dad touches as I can because he is overly susceptible to infection plus it is a safety factor for myself and my stepmom. I asked him to flush with the potty seat down tonight (I can flush the 2nd time before I go). He yelled at me and said I am not a Dr. and that the next person can flush after he goes and if they don't like it they can go outside and then told my stepmom they needed to get me a dog outhouse. I am thinking of his exposure or extra exposure as well as mine and my stepmom's. I think he feels ostracized and that I am a reason for that. Sighs....maybe I am. I don't know. I've had to call my mom every night to be talked down including tonight cause I can feel my heart racing and beating so hard. I couldn't get in touch with my daughter for a few days...her phone was cut off and it took a few days to have enough money to turn it on again. I was extremely stressed about it and worried something had happened. Yes this is a total pity cry, pooh blog, or whatever else it can be labeled. It is my reality though at least for the past 3 weeks. Can somebody say thorazine please. I am going to go watch YouTube vvideos of kittens now. Night.

tmciriani

tmciriani

 

a hunting we will go....

Yesterday was both an exciting day and frightening for I submitted my first job resume in almost 10 years. My doctor hasn’t entirely allowed me to work a part-time schedule but I’m looking for just that. I see him on the 20th if this month and will talk it over with him. The reason being is, to no surprise for many survivors, I can’t play my bills.. I mean I can but it will only leave me with under $100 for the month, and that’s not including food or property taxes & car insurance.   I have been talking about this a lot but I had to start paying for my Medigap insurance.  What that is is Medicare only pays for 80% of a bill and sometimes less than that so the Medigap, or Blue Cross/Blue Shield of New Jersey, should cover the rest. We all know some medical bills can cost a small fortune and when you’re on a fixed income, repaying what you owe can be darn near impossible.  Being under 50 and a resident of New Jersey, I am limited to just this insurance and if I don’t get that insurance, I cannot get a Medigap plan again until I’m 65 years old. Pretty crappy… yeah… I didn’t realize it would cost me so much for my plans- Both Medicare and Medigap. Almost half of what I get a month. Thankfully I have P.A.A.D (Pharmaceutical Assistance to the Aged & Disabled) I’m not sure if it’s just in NJ but anyway that covers my medication.  So I know every little thing helps but yeesh.   So back to my resume- I was a my DVR (Department of Vocational Rehabilitation) and we talked about the ARC of Cape May County (Mission Statement The Arc of Cape May County, Inc. promotes and protects the human rights of individuals with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.   The Arc of Cape May County, Inc. is committed to enhancing the quality of life of those individuals and their families through direct services, advocacy, empowerment, education and prevention.) So as you can tell by the mission statement that is a fantastic place to work for in another life, I worked in an institution for those who were well bad off. But I digress…. Every job that isn’t basically winning the lottery sounds way beyond my abilities. I know I’m walking into the unknown and I haven’t even got the job yet but I worry that I can’t make it. I mean I get super tired after a busy day. I know I’m just putting on the brakes of what my mind is telling me because it’s a new thing. I really need to just see what happens and talking to my doctor (Neurologist) and be thankful I have a contact coming to me that will eliminate the bouncing in one eye and be grateful for those things.   Being an adult stinks sometimes.  Thank you for letting me vent and I apologize if I’ve ranted a lot about this but as with everything else... It’s a first for me.

ksmith

ksmith

 

overcoming pride

Since my stroke, I have been living as a guest in my niece's home.  Her daughter, my sis, also lives here, in the finished basement of an older tri-level home in a very small Indiana town.   Honestly, life here suits me fine.  I have everything I need, even though I need help with a few things.  I do feel that I am capable, both physically and mentally, to live on my own, in my own place, and sometimes I do feel some slight guilt at my imposition on the niece and her family, but she did invite me, without limitation, to stay as long as I like or need.  I don't want to feel like I am taking advantage of her or my sister for their generosity and hospitality.  I do pay my share of rent and bills, but more important is the fact I am able, while living here, to save money.  Up to, in most months, $700-800 per month, and am aware that the longer I can deal with the guilt feelings I can save a good sum of money ,if I stay another 18 months, to get me started in a new, independent existence, probably a couple hours north of here where I would be closer to doctors and medical treatment.   This is something that is constantly gnawing on my mind, and I am a very impulsive person.  so I am a bit scared that one of these days I am going to succumb to impulses and move out prematurely before I am really prepared financially.   This is something I have dome many times over in the past.  I can actually admit to occupying over 20 different addresses over the past 14 years, including a couple homeless periods when I lived out of my car in Florida.   I honestly, as an unattached single person kind of enjoyed the homeless lifestyle, free of responsibilities, but in my current physical condition I think I would be too vulnerable to attempt the homeless thing again, as tempting as it may be.   Truthfully, too many lingering and transient periods of hopelessness and thoughts of self harm haunt me, so indecisive I be, for now, until hopefully my mind settles enough to make rational decisions.   My mind, with all it's crevices and dents, is a prohibitive factor in my decision processes.  at least I am able to recognize this about myself.   I always had this dream of just living from day to day sleeping wherever I could find a spot for the night, constantly moving, indulging the generosity and hospitality of whatever stranger presented opportunity, but then I would catch myself, suddenly recognizing my own limitations in the socialization department.   WTF is wrong with me?  At times like these I feel even more of a freak than normal...   But it must come out, and empty this mind of this scrambling, I must..   Just one more rant of admitted loneliness to deal with so, happy Sunday, I guess, for now.

beingnobody

beingnobody

 

Stroke Group Morning Tea and ongoing health concerns

Once a year the Stroke Club I belong to gets together with four other clubs and we have morning tea with a guest speaker. Today instead we had a group survey as a charity fund has given a donation so that the Sydney based group can supply two coordinators to help the other groups extend their services. It is a great idea and addresses the problem of resource poor clubs going out of business for lack of new members. Our club is a flagship club as we have a lot of people sent to us by medical professionals.   I have been a member of WAGS since 2006 and still belong because I can support the other caregivers and survivors on their journey. I have some wonderful friends in that Club who have supported me in so many ways. The discussion group I was in all said that they didn't know how they would have survived as well as they had without the love and support they had received from fellow club members. I agree wholeheartedly. In the bad years being able to tell others exactly what was happening without fear of criticism made such a difference. We all need that, people who love us without wanting us to be perfect, or even rational at times.   I am so grateful now for friendship. Just to know that people love me or simply care about me makes such a difference. When I am not well, when I am looking at my life and not liking what I see in the future, when I am looking at the mud not the stars is when I need to know that I am accepted by people just as I am. I support others as much as I am able to, I have always had a great love of people, all kinds of people, and that keeps me going. Today I had lunch by myself in the shopping centre and just sitting watching families eating, laughing enjoying each other's company lifted my spirits.   My family do love me but their busy lives mean they don't support me day to day. I know that is typically the case for many others here, we are here, they all live some distance away. When Ray and I were both well and had the campervans there was no problem  visiting family and friends but that decreased after his strokes. Now for me as a widow it is hard for me to decide to travel alone to see friends who are spread far and wide. And few come to see me. So it is easier to stick with local friends and leave those further away to  be contacted by email or  the occasional phone call which means we lose the closeness we once enjoyed.   I had some good news last week when I saw the Melanoma specialist, my PET scan showed no hot spots so that is one clear test.I need four to be fairly sure I am out of danger. One down, three to go. I do have several other health problems to tackle so my specialist  is making me an appointment with a neurosurgeon to report on the aneurysm in my brain. She said now she has seen it in the MRI she must take the step of involving another health professional. That is another set of appointments to add to my calendar. But knowing what I do about stroke it is better safe than sorry.   I am doing a lot of hospital visits, people from the church as well as friends from the community. One of the members of another organisation I belong to has a brain tumour, another a broken shoulder from a fall. My special friend Lyn has been in hospital for four weeks from when his chemo caused his body to shut down. He is slowly recovering but three days on the floor without food or drink have taken their toll. That certainly is a warning to those of us who live alone to make sure others know what is happening to us. I am aware it could happen to me under certain circumstances. I am doing a short course called " Better Health Management" which emphasizes the need to keep fit and take care of ourselves. I know I need to exercise more and keep myself strong.   Spring is slowly advancing, sadly with no rain and most of the Inland in the grip of drought. A lot of our wheat, sheep and cattle farmers are in dire straits. Meat prices are rising and the cost of vegetables as they are sourced from distant markets. But I have a roof over my head and food on the table. Really we have little to complain of don't we? That is why we need to be thankful for what we have and mindful of the needs of others.    

HostSue

HostSue

 

I know my problems are nothing compared to what others are going through

I do have love hate relationship with my husband, in some things he is angel &  I love him for his behavior & in some cases he will act so indifferently that you wonder does he really likes to be with you or not. like I say he is great dad & husband in taking care of his responsibilities, you feel relaxed because you know he will make sure things gets done. but ask him anything I would like to do like go on some fancy vacation or going to restaurant, he will be least interested & you wonder whether he likes to spend time with you or not. but he does not stop me from planning it, but he is least interested in showing any enthusiasm for it. So I  feel I m dragging him & that reduces my joy, though after every time we go on vacation together because of my nature of going with flow we end up having lot of fun. So I hate that part of him, anything I want to do his first instinct will be to say no & then he will come around saying yes which reduces my joy. finally after my stroke I have learnt only I can control my happiness & not give any button of my happiness in other people's hands. But I hate that feeling as if you are living unattached single person, cause I would like to feel as family who takes care of each other joys & sorrows. Just writing down my own thoughts & confusion about life, love & family  

achandra

achandra

×