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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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  • 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.    
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Tomorrow is Going to be Crazy/Unknown

Tomorrow my dad gets his first dose of radiation for his lung cancer. We are all just in a weird wondering mood. My dad is in good spirits which I am so glad. The very next day he gets his first dose of chemotherapy. I pray it is kind to him or at the very least that he is able to be ok with it physically. I know if the chemo is too much that he can just raise a white flag and the Oncologist is really supportive of this. Just praying for whatever he goes through.   Tomorrow I go to my PCP to hopefully get some answers about the lump on the side of my neck. My ENT wants me to go ahead and see Dr. Coil because it will be quicker than waiting for an opening there. The therapist said he may send me right back to my ENT and that was ok but he can do initial research into what it is. I have just kept it off my mind...kept my thoughts on my dad and try to give him positive vibes. So keep us in your thoughts and prayers and send an extra prayer for my dad. Thanks guys.

tmciriani

tmciriani

 

Lamentations tumbling dice...

So many things in this squirrel cage mind...   My three year anniversary of completion of radiation and chemo for throat cancer approaches..YAY!!, I guess, but not sincerely feeling it.   I turned 62 a few days ago.  I was worried about that one.  Both my eldest sister and oldest friend passed last year, each within weeks of, but short, their 62nd birthday's.  I had envisioned some omen there, but here I am yet.   So my Oncology appointment, along with a ENT appointment, a Primary care appointment and Psychiatry appointment, topped off by a good old fashioned colonoscopy Oct 2nd.   So very much joy awaits me, and then hopefully, should I survive it all, a return to my sedate, reclusive, and non-eventful existence.   I did have the brief excitement this week of taking a roadside tumble on my little Pride Go-Go scooter at about 1AM a couple days ago as I went out in an insomniac fit to check mail.  Luckily, mailbox directly across street from house, and traffic was light, but I was barefoot, and in great distress and foot pain trekking that short distance, hobbling and wobbling, without cane, back to my humble abode to seek assistance retrieving my trusty steed.  A slight roll in the gravel and grass, coupled with the humility of clawing my way to my feet and accessing the damages to my person and properties.   Here I sit, days later, again at my post, typing my woes and apparent self pity into the ever accepting abyss of humanity.   The Psychiatrist appointment, of course I dread, with his never ceasing inquisition into my possible inclination toward self harm or community endangerment, which I always deny, with pause.  I don't know that I can ever really say that I have no thoughts of self harm, because I do, constantly, but not continuously.  I can't say a day goes by that I do not contemplate my death, in one way or other.   The most that I can really say about life any more with all my "baggage," is that life is tolerable, acceptable, I guess even satisfying, in some way that I would in no way be capable of explaining.  I could NOT say, however, that life is actually "enjoyable," beyond the occasional brief, yet transient moments that flutter in and out of my awareness like a feather in a hurricane.   The most enjoyable moments of my existence really seem to spring forth from the moments that I am struck with the inspiration and motivation to write.   I do love writing, even the hunt and peck, one finger style writing that I have adapted, and to which, no doubt, many others in the stroke community have become familiar with.  I take a lot of online college courses via Coursera, edX and Khan Academy.  I need that daily stimulation and mental challenge.   I do think that this particular episode of my writing has reached it's conclusion, and that perhaps sleep, for a brief period is now imminent.   Happy Friday.

beingnobody

beingnobody

 

Playing Double Solitaire

My son gets me cards regularly to share with another lady who plays solitaire 27/7. She is 93 And hard of hearing. No words needed. When we get together to play we go for 2 full hours until the next meal. She is a serious player. I get distracted chatting with others sometimes. And others come begging to be dealt in a hand of Rumy. That is what they play with her when I am not around....and I have not been in a while....And my son had my tote bag with cards for safe keeping the last couple of weeks while I did procedures.....So TODAY we played cards. There are some strange people here that are pure toxic....3 that are at eachother....like kids.....I never know if they enemies or friends.......and their common bonding is a woman with dementia that they parent..protect...common thing unites a band like that....   and today they were going on about how they did not have any cards to play with...because me and the card shark were doubling down on double solitaire. Oh no cards around here or games of any kind....   So we played on she taught me and I havə a passion for it  I love this game    

SassyBetsy

SassyBetsy

 

Looking forward to warmer days

I am surviving winter, in five or six weeks Spring will be here. This has been a cold winter but today was mild and most people seemed to appreciate the day, even saw some out in short sleeves. I am in my busy week, hospital visit today, birthday morning tea tomorrow, church women's meeting on Friday I still like to be busy just not too busy.   I have started a new course called " Better Heath - Self Management" It is a free  course, a government health initiative to tell us to meditate instead of taking pain medication, or is that my prejudices showing? When I talked to the group about my problems with Lymphoedema I got some blank looks from the nurse conducting the course so I guess she has some research to follow up on. Ignorance is not always bliss. I have an appointment next week with the Lymphoedema Clinic. What I am hoping to get from the course is some help with my gait since I am having trouble walking down stairs still.   The family are doing well now, all the grandchildren back at school. I did get to see the three grandchildren  from Adelaide but not Shirley and family as they were suffering from chest infections etc. I think we will all be glad when Spring arrives I don't know what plans to to put into place this year with all the restrictions of my health problems. I can only fly for three or four hours so my plan to go to England next year is no longer possible. I can't do international flights at all now. Such a pity with all my cousins in England and Canada.   So what will I do when the warm weather comes? Think local. Be happy I am still relatively able bodied. You would think by now I had learned not to keep worrying about what I can't do and concentrating on what I can do. But moving forward through life changes is always hard to me. For me life settles into a routine I can live with, the next minute that routine is interrupted and I feel as if nothing works in my world. One thing leads to another and everything is wrong. It takes a while for me to see a way forward again and find my new normal. So my new normal now is venture somewhere within a more realistic  distance from home.   My life is still full with church and the Lions Club and the various forms of volunteering I do. Last Saturday the WAGS group had "Christmas in July" an Aussie custom that is just an excuse for a mid-winter get together. It wasa great lunch and a good afternoon of catching up and I really enjoyed the company. I do keep in touch with as many people as I can but old friendships do fade. Sad to see signs of strain on the faces of some of the older caregivers now and know that in a way I am fortunate that part of my life is gone now. I am glad I was in good health when I had Ray to care for.   So I get the results of my tests next Wednesday and go to the Lymphoedema Clinic on Thursday. There is always some anxiety about the results but we all have that when we have tests. I will continue to take life one day at a time and get what fun out of each day that I can. I am looking at life ahead of me as calmly as I can. And yes ASHA I am trying to go with the flow.      

HostSue

HostSue

 

Update on my Dad

I have found out some more info about my dad and his cancer diagnosis. He has non small cell adenocarcinoma, it is extremely near to his esophagus and because of that inoperable. He will be starting radiation treatments on the 30th of this month. They will be lower dose than usual but for a longer time so as not to injure his esophagus. They did find 2 lymph nodes that are near and seem to be somewhat enlarged but they scanned him last week and there is no cancer metastasis. So it is still in stage 1 but like stage 1b because it ha increased in size since May. Non small cell carcinoma is good because it is much slower growing and has a much higher rate of beating it. We found out today that he will also have chemotherapy starting on the 1st of August. His odds are 80% with radiation only and 85% with radiation and chemo but it was the Dr.'s decision whether he could have both. The oncologist he spoke with today said that they have a lot better ways to relieve side effects today and he would have a choice to discontinue the chemo at any time if he felt he could not take it. My dad said today that he already feels better just knowing....it took so long to get answers and it gave him pretty bad anxiety. All in all I think we/he has had the best scenario there could be and we are all thinking positive.

tmciriani

tmciriani

 

Nice to Knit ya..

On Mondays, for the time being, I go either to my Aunts house or other members home and knit. I learned how to knit from my grandmother but learning after stroke is basically learning all over again. I enjoy it. I enjoy the company of the group. They are very understanding of my speech and having my Aunt there helps a bunch. She has been knitting for a billion years and with in 3 weeks ( she says she really didn't have time for this.. yeah right) she knit my little cousin a sweater jacket.  A SWEATER JACKET..  I made a thing... it's kinda a scarf.. or a pot holder mat.. I know I'll get there....and yeah she can also knit with out looking...  It's tiring.. mainly for my eyes but it will get better. I'm not sure how long I can stick the Mondays for in a few days, I'm going to Department of Vocation Rehabilitation ( DVR ) t seek a part time job. My doctors have only cleared me for a tiny bit, like 4-6 hrs a week, but I can't survive on just me. As with life, we all must persevere   

ksmith

ksmith

 

even when you are broken open realizing not everything is broken is so important

Sunday is my super soul Day, I get AHAs by dozen &  it is fun to see my whole journey getting validated by so many others who have walked on similar path of suffering I had been through when I felt such a huge loss of my dream of how things should be shattering into pieces, but realizing in midst of all that suffering not everything was broken, even though I was all broken open. I am so blessed to be married to such a great guy along with my sister reminding me to notice those positives when I was so much surrounded by all the family & friends 24X7. I couldn't have asked better family than my own.  Anyhow back to sermon I got today on my super soul Sunday where Mark Nepo was pointing it out that realizing this in midst of suffering that not everything is broken in your life even when you feel like there is nothing left gives person strength, I know It did help me when I was surrounded by so much love even when I felt like my life was ruined & I didn't have any reason to live.   Asha  

achandra

achandra

 

Alaska trip complete

We have completed our Alaska and Canada trip about a week ago. I have attached a few pics of the trip (I think). It was everything we had hoped for and more. We left Tennessee May 4th and got back in mid July. From TN we went to Iowa for some minor repairs to the motorhome at the factory and then on to the corn palace in Mitchell, SD. Neat place. Then on to Devils Tower, Wyoming. From there on to Banff. Alberta, Canada. Mum loved every minute of it she was like a machine gun firing out questions about everything we saw. Kept Lesley and I on our toes!   Lesley and I shared the driving everyday. I drove in the morning as I am fresher then and she drove in the afternoon. Lesley took a driving lesson last year with our motorhome and so I had complete confidence in her driving ability. She drove up and down the mountains without any problems and did a great job of shifting gears, etc. Mum was the wildlife spotter in the passenger seat.   from Banff we went to Jasper, and the Icefield parkway between the two is spectacular. Mum saw an avalanche in progress on the way. From Jasper we went into British Columbia into very remote areas., Prince George, Pink Mountain, Fort Nelson Laird River and a few others. We went into Northwest Territories and saw the buffalo there. Very remote area.   we took the Alaska Hwy to Whitehorse, Yukon and stayed a few. Days and hit a Walmart to restock. We saw large beards of buffalo, many bears, moose, elk, caribou and some other things. We did see a mommy black bear with three cubs in tow. Neat! We camped on lakes and true wilderness. Finally on to Alaska to a town called Tuk. And then on to Fairbanks where Lesley and I took a flight in a small plane north of the Arctic Circle and saw the midnight sun. Then on to Denali National Park and mount McKinley.    Then on to Homer, Alaska and George went fishing for Halibut and sea bass. Yum! Then on to Seward and the Fiords National Park via a cruise ship. We then wrapped up Alaska and returned to Whitehorse, Yukon. Our plan was to head to Dawson City, YK for some gold panning and then back to British Columbia. Unfortunately at that point mum started to have what we think were TIA’s. We immediately headed south to get back into the lower 48 states as soon as possible.   after three days of hard driving thru Canada we were back in the USA and four days later were back home in Tennessee. We called the local doctor while still on the road and he agreed to make a house call and did so the day after we got back. He diagnoses likely TIA’s and heard some fluid in her lungs. He increased the Lasix and suggested oxygen. Since then she has recovered well but we are staying close to home for awhile.   we all loved the trip and are most happy we did it even though we had to shorten it a bit. We have created memories that will be with all of us forever. Mum’s late husband Bill would have been happy so see what we did and I can only hope he was looking down with a smile.   on the medical side, both Lesley and I are well, I am a bit out of shape due to lack of exercise and so will spend the next several months working out most every day. An exception will be for a short trip I will be taking next month to see a longtime friend in Texas. Lesley and Mum both tell me to go so I guess I will.   well have to go now.    

GeorgeLesley

GeorgeLesley

 

I Want to Have Normal Reactions to Things

Part of my problems after stroke are psychiatric in nature. It really upsets me to be so strongly affected by every little thing. It is an emotional rollercoaster even without any physical stuff at a moment. As I said before I haven't been feeling well and have been really tired on top of post stroke fatigue that never went away. My dad woke me up screaming this morning around 6am that my cat had puked a lake on the floor and I had better get up and clean it up. I told him I would clean it but was still half asleep and fell back to sleep. I had my alarm set for 9 this morning and I got up and put some clothes on to drive and meet my step dad for a moment. It was while I was dressing that I heard the angry scream from my dad to get in there. So I took some carpet spray and a handful of paper towels with me as I headed for the back door. Just as I was about to clean up the spot he told me that the next time I don't get up when he calls me that he was throwing my cat outside that he wasn't living in filth. So sometimes my mouth says what my thought is before I can make a judgement whether to say it or not. My stepmom is a (clean) hoarder. She won't throw anything away or donate anything except food and truly gross stuff. So I said " You already live in filth everyday." Then told him again I was sorry and that I hadn't felt well. He screamed well I don't feel good either (my dad just found out he has lung cancer). I told him I knew he didn't and I had not said a word to him to fuss about anything. So I finished cleaning the spot and threw away the dirty paper towels and then headed for the door upon which he screamed "Now where are you going". I let him know I had to meet my step dad and would be back in a few minutes and left. Of Course the tears start falling as soon as I shut the door. I cried all the way to the grocery store. My step dad said he was sorry my dad cans I wore fighting. He also said that October is not that far away (my disability hearing). But then said you are going to have to get yourself together and only you can do that. I hope you get good results from your hearing but if not then you'll have to do what you need to do and work and get out on my own. I just told him I know. I wonder why I see my Psychiatrist every 2 months and still have panic attacks. Or why I take depression meds, anxiety meds and ADD meds everyday. I just need to get it together. Right? Right. Invisible. No matter how hard I try. Can't help but feel that way sometimes.

tmciriani

tmciriani

 

I Dont Feel Good Today

For the last 2 nights I have fallen asleep around 7pm and woke up for about 30 minutes before going back to sleep. Each night sleeping 11 hours. I had a Dr. Appointment yesterday due to some chronic hoarseness I have been experiencing since January. She poked all around my larynx area (painful) and I showed her a lump I have on my neck (wasn't sure it was there but she says yes it is and the Dr. needs to know)(she is a voice therapist-part of my treatment). Anyways, I'm thinking great. Now we go forward to last night around 12 and I woke up feeling sick...neck pain, muscle aches and joint pain, headache, sore throat, general Ill feeling. I was also extremely tired so I went back to sleep until 8 this morning. Today my sister's step girls are here while she and their dad are at work and my patience is low. My stepmom is at the dentist having 6 teeth pulled and a lower denture plate placed in. My dad now with his diagnosis of cancer tells me to help my stepmom today and complains about the girls warning their ego waffles in the toaster. The nurse calls from the ENT office and tells me to make an appointment with my PCP first about my neck and then we'll go from there. I have already cleaned the kitchen because I do that. My stepmom left a bag of dirty clothes next to the downstairs door and that means wash them. I am nauseous and my fingers feel swollen and I feel like crap. I just want/need to lay down and rest. Oh and I have to take the trash out. Lord please give me the energy and the patience to get through the day. 

tmciriani

tmciriani

 

RFA tomorrow

I get it done thank heavens. I pray all goes well with sedation and spinal. I trust. I trust it will go like before. I hope there is not some student there that freaks out when I yell stop. It just comes out....I yelled get this done and it seems it took that guy forever but he was told by doc to continue numerous times. It is painful procedure. I take sedation in IV, they put airhose with tiny things in nostrils. All is well. I climb on table which is scary for me. I feel like I will fall and I go slow. Tomorrow I am going in the chair.   The promise of relief gives me courage. I will see son this weekend.But just to bring my stuff. He is always busy. Of course.   When alone I cry for my daughter and my grandchild I have been denied knowing because my daughter thinks I failed her,failed to love her. I ask son. he was there too. he sees another story. Anyway I wonder how much hate does she have to stay away. But maybe she cannot phone me my number is different now I am in new area. But wait she knows where I am could google call me here. wow. she never misses me. hard to take. I feel shame humiliation. being a good mom is something i was proud of worked at. guess she is busy being mom to sick baby.   I try live in moment. but I miss who she is. our closeness before i had the stroke.   some days i think why did they bring me back when i stopped breathing then feel ashamed bcuz my son has loved me well and I love him. I cannot believe she will never be my daughter again...then I am furious for putting me through this. I never chose stroke.   I never chose stroke. my life was not made better by any law suit or thing. I never see now as good as then ever. U suffer. I am not just inconvenienced.  My family was torn apart over stuff. now years later i cannot even recall it. seriously. i just miss what good times i do recall. when i was proud grateful. but wgat was more real. I just want her.   oh well. I opened the gift bag for grandson. she said I gave too many stuffed animals. funny. my mom said I bought too many for her. there is pattern here. and not my compulsive bunny buying. not much.   so this tiny lilac grey with grey scarf will not be regifted. I keep it in my bag. i sleep with it. not grown up enough? I color all day. lol. small funs. living being. that is all. ok.   I have a gratitude list. I am glad of things. small pleasures are big ones. My body seriously is damaged.   my mind follow it.   but still not enough help. temp help. no hope for something more.  

SassyBetsy

SassyBetsy

 

family and funerals

Dan has had 2 uncles die in the past 1.5 months. Although he was close with them back in the day and up till the stroke would go home and hunt with them , they had not put any effort into coming to see him or reach out in any way. So when Jimmy died - I figured I wouldn't tell him, why- things good and bad like that create depression for Dan and by default depression in me as well . But one of Dans sisters decided to stop and see Dan at the home on her way home from Jimmys funeral and told Dan about it- so that blew up in my face. It had been 4 years since she had made any effort to see Dan but had to stop in and create some chaos. I don't think it was malicious - just thoughtless. although Dans family did make a "hub -bub" about no one from Dans family being in attendance.  So when "Terry" died I told Dan, and he wanted to go to the funeral ( he was closer to Terry ) , so we did. So we got hugs and a thanks for coming. But his family chose a inaccesible place to sit together and no room for Dan. So we sat in a area by ourselves. Some aunts came and sat with us and other various family as well. But Dans immediate family just stayed at their table and never came and talked to Dan . I could not have gotten him and his chair over to their table if I had tried. So we ate and we left.  It was a very uncomfortable experience. I guess I expect to much. And in reality, if situation was reversed would I be any better ? I don't know.    On another front - I have a friend who came home for a funeral from Oklahoma  , Her and I were close back in my old work days. She has had 2 kids and her husband is a genuine POS who just can't keep a job, can't be trusted to help with the kids, doesn't pay her opinions any mind, lets his family treat her like garbage - etc. etc.... the is is a smart hardworking girl. But through the past two or three years has only reached out to me during the bad times in her world. I have helped her financially, I have offered to pay to bring her "home" . But she stays in that bad situation. So she came home was at my house rehashing her life and I finally just said- Your married to a POS and the only person who can change your situation is you. She took it ok at the time. But musta ruminated on it through the night, cause she was gonna call me in the morning but never did, and I found out she left town. I feel bad, but - Im not a good person to whine to, especially cause I got my own issues . And I have helped as much as I can. But I also know she has no one in her corner, so I wish I woulda just kept my mouth shut and stayed in her corner. And I am still inner corner. as I texted her and said when and if she needs I will still make good on my offer to help her move "home".  Life.... 

nancyl

nancyl

 

Final Entry

Well, it's been a long road to hoe, but Dad passed away on March 14, 2018.   While it was not a stroke that did Dad in, I'm sure the history of the stroke and diagnosed vascular dementia helped.  Per the death certificate, the doctors called it  "End Stage Dementia".   Lots happened since the last time I was on and even posted, but as a quick timeline...   Dad lived with me until April 2017....   April 2017 - Moved into Assisted Living   September 2017 - Had a cognitive issue that required him to be "in respite" on the rehab side of things.  It was meant as a temporary holding space until the memory care unit opened up.   Early October 2017 - Got pneumonia   Mid to Late October 2017- His kidneys failed and he ended up with a "classic" catheter and 50% kidney function; and was placed formally in the nursing home.   Thanksgiving - 2017 - The "classic" catheter was changed to a permanent supra-pubic   December 2017 - Things were okay...   January 2018 - I started noticing him dropping things and not really with it.   February 2018 - I was helping him with a special treat and at one point he could not tell that he was not holding it and was chewing his own finger; more dropping issues;    Early March 2018 - We started him with the in-house doctor as it was too hard to get him out; She recommended that it may be time for hospice.   March 11, 2018 - Hospice paperwork signed   March 14, 2018 - He was gone   So now I have to relearn how to live my life.  I put so much on hold while taking care of him and being so involved even after moving to AL.  It's only been 4 months, sometimes it feels like yesterday.  Other times, it's easier to bear.  As much I know saying something can create the situation, this first year is going to kinda suck.  I've been to my therapist and we talked about the fact of his passing and realizing that I'm now grieving mom finally too.  Dad moved in with me in Sept of 2013; Mom had just passed Feb 2013; His strokes all happened in Jan 2014.  I never had a chance to properly grieve for her.  Now I'm reliving her passing and coping with Dad's passing also.   So that's it in a nutshell.  I had wonderful friends throughout this that helped and are still helping me.  I'm still struggling from time to time, but it will get easier.

JeriB

JeriB

 

Concert fun

So my parents invited me to see a concert of two bands that were big in their youths but I like as well. The Doobie Brothers & Steely Dan. I was worried it was going to be to over whelming. But then I remembered : 1. I was hanging with my parents ( who are very chill) 2. Most of the folks that were going  to be there would be , generally, over 60.  We arrived about two hours early for I had a doctors appointment before the concert so we decided to tailgate. Our tail gate entailed of hanging out with two other random parking lot  folks eating hoagies ( l they ate the hoagies lunchmeat sandwiches) and drinking water. We finished off our lunches from earlier that day and sat and shared youthful stories for the random folks and my father grew up in the same neighborhood in Pennsylvania and the shared stories while my mother and I tried to stay cool for it was hot that day.  It was time to get in line to enter the venue so we grabbed our beach chairs and while we were walking to the security line, I was starting to get worries there wasn't a lot of people standing in line. I am not going to fib but I was kinda happy to not get completely overwhelmed but just to be sure I brought some ear plugs.  And wow.. I forgot how much "grass" or marijuana is smoked at rock concerts. We were sitting in smoke central.. It kept me pretty chill.. my father and I were fairly big pot heads when we were younger so we kinda just flowed with it plus Steely Dan is pretty jazz-ish chill-ish rock. The people that were there and dancing were re living their childhood and it was nice to see them dance but I guess sometimes some enjoyed the herb a little to much.    It took me a few days to get to myself again.  But I'm glad I got to spend the time with my parents and they asked me.. I'm going to a local one with my parents at the end of the month, this time more geared towards my mom... more bubblegum 60's. 

ksmith

ksmith

 

I'm Just Going to Think Positive

I also wanted to share with you all that my dad is going through some health issues right now. Some scary ones. He has already been diagnosed with COPD 2-3 years ago and a recent chest scan showed 2 suspicious spots on his lungs....one new and one that they had noted before but it has grown. Last week my Dad had a biopsy on the new one. He had to be put to sleep and it was done through endoscopy within his bronchial tubes. He is so blessed to have a negative biopsy and no cancer found in the first spot. This past Monday he had a second biopsy where they went straight through his chest into the lung (he had to be awake because he had to control his breathing for the test). His physician just called this morning and told my dad he would make an appointment for him and my step mom both (she is out of state due to a family wedding) to come in for results consultation. I didn't say a word but I felt inside that it doesn't sound good. I really don't know though. The Dr. told my dad and sister last week that he is 97-98% positive that it is cancer but he has to find out what kind...that will determine treatment. I am just trying to be positive and present with my father while my step mom is not here so it won't trigger his anxiety. Please keep my dad and my family in your prayers and thank you so much if you do. Hugs.

tmciriani

tmciriani

 

Pure Excitement and Moving Forward

I just want to share with all of you that I received wonderful news in the mail yesterday. My disability hearing was scheduled!!!!!! The day is October the 25th!!!! Months before I expected. I spoke with my lawyer today and he had really good things to say. He said he was just thrilled at the judge I got. He is really fair, really has concern for others (empathy), is not swayed by age of the person trying for disability (my lawyer says that there are a lot of judges that really look over some because they are younger...under 50), and he is very caring about mental health issues. He said I really have a good chance just because of that. Everything he said was positive. He told me he will be in touch with me at the end of July and we will work on making sure they have all the health records or anything new and that my file is complete. I am really emotional but in a happy way...it is just overwhelming that I feel some positive and I couldn't wait to share my good news with all of you. I pray and dream about the ability to have my own home and to be on my own. I sometimes try to look at home stuff I like and plan and imagine just being on my own and can make my own decisions. Just crying lol. Any positive thoughts and prayers would be so wonderful. 

tmciriani

tmciriani

 

New Girl in Family

Ever since we got back from our Colorado trip in June, Misha (our little schnoodle) has been missing her playmate who visited often while we were away.  The neighbor girl would bring her female shitzu mix over to play and Misha loved the company.   So, for Gary's birthday I decided I'd try to find a new lap dog for him since Misha prefers sitting on my lap and hanging out with me.   On Tuesday of this week we picked up a 6 month old chihuahua mix from a family who had too many dogs and were getting ready to move and couldn't take them all with them.   They had named her Lala, but we changed her name to Leila (pronounced Lay-la) because I liked it better.   lol       Wednesday morning, I took Leila to the vet for her first wellness exam and her rabies and distemper shots since the previous owners had not done any of the shots.   The vet checked her out and said she appeared to be quite healthy and she  was very cooperative during the exam.  We go back in three weeks for the 2nd booster for the distemper and then again 3 weeks after that for her third in that series of shots, spaying, microchipping and removal of a dew claw on back left foot.  Our biggest challenge will be keeping Misha away from her after her surgery so he doesn't accidentally cause her to tear open stitches.   We may have to kennel him a couple times during that time.      Gary is enjoying the cuddle time with the new pup and when she's not on his lap, she makes him laugh when her and Misha are chasing each other around the living room stealing chew toys from each other.   She sleeps on my bed at night while Misha sleeps in the kennel at the foot of my bed and she's been real good about going out to potty when he goes out, so that's a huge plus.     Sarah    

SarahR

SarahR

 

Its always pleasure meeting my physiatrist

Usually every two years I go & meet physiatrist to fill up paper work & see if he has any good idea for us to try. After 14 years of visiting him, he has become friend to us so meeting him is always pleasure  & fun, he gives me hard time & reminds me  to wear my AFO as  I might not get lucky in my future falls, as according to him & hubby I am not getting any younger any more lol. They both know booboo I have accumulted so far So I better wear my AFO. It's always fun arguing with him about my reasons & ofcourse meeting all those young doctors also fun I enjoy teaching them they are affecting life of real people here & they are making huge difference in quality of life of people by doing their job  & also seeing our son in them makes me so happy. Recently I had to fill up some government paperwork for getting indian visa  & I decided if my brother can do it, I can do it & start the process, man it took me solid few days to finally everything filled up correctly, I feel I deserve vacation after accomplishing that job & feel so smart now. I think my IQ level must have doubled in doing that  exercise lol. Anyhow when you accomplish something in life it does make you feel happy. So I am happy camper right now   Asha    

achandra

achandra

 

scanning

Dan likes to be busy-- I found the perfect pastime, he is scanning things at my work. It is entertainment for him. He feels useful and it is needed. Problem ? What!?? Dan cause a problem? LOL  He wants to come everyday to my work.... Not practical. But I am doing my best to keep it regulated, in reference to my work. And he gets to leave the home 28 days out of 30, so he is not just wasting away in a nursing home- we will go to grandkid events or to my daughters house or cabin and visit. Dan is doing fairly well right now, we still go through the no eat no drink days. But not so much right now, I keep  the mantra - "if God wanted you, he'd have you."  He lost 2 uncles in the last month and is kinda sad, although we hadn't seen hide or hair from them since Dan stroked, so there is that resentful feeling , that you wish you could rise above.  Its hot here in ND, But we stay indoors for the most part.  The nursing home scratched Dans glasses so Im dealing with getting Dan a new pair, but even something so simple , with Dan and his OCD is difficult. Im thankful to have the nursing home, but at the price tag it carries and the amount of work I do in taking care of Dan am bothered by it. But my caregiving has to have some boundaries - or Dan will run me ragged and NUTS again. But gosh I feel guilty.                                                                  My sister takes Dan to a movie on fridays , giving me that "day off" to work, and sometimes go out with my friend Wendy. Or just go home and vegetate - or like others net flix.  Cant seem to get the ambition to go and do some good housecleaning- I got to go through stuff and PURGE.  Over all my depression is better than last year at this time, so I guess thats progress, Im making a real effort to resign that this is my life, DEAL with it. I've put on a lot of weight  - admittedly mostly alcohol calories.. LOL -- that is what it is..LOL

nancyl

nancyl

 

In the middle of a nothing spell

It is the colder, darker part of winter. Rainy days have been and gone, now it is blue skies but bitter winds. This mix is  the setting for my usual dose of mid-winter blues. I haven't had any visitors for a while now, just a few phone calls, the ones I dislike are the ones telling me that another dear old soul from church is in hospital with a broken arm or hip or a bad dose of flu. I want to scream: " Give  me some good news." But good news is in short supply.   My daughter has been ill with a chest infection so I rescheduled my medical review as she likes to be  there to find out the  results and the Professor's conclusions. I have had all the required tests and the results must be okay or I would have been notified by now. I always used to tell Ray whatever the doctor diagnosed he had had it for a long time so why worry now? And I am applying that as advice to myself. Wherever possible I just live one day at a time now. I wake up, put my feet on the floor and wonder what the day will bring. It is the best way I can live. With the way my body works now it is not worth making plans to do things I don't have the energy or stamina to carry out.   Last week I had a tree taken down, it was beginning to lean over the house and when the winds blew strongly I was starting to worry that it would fall down across the house. The tree felling gang had a big machine that chipped the wood into sawdust and so I kept only the trunk wood which the neighbours wanted, one for his indoor fire and the other for his outdoor BBq. Wood fired BBqs are slowly returning to fashion as we start realising that we must cut household costs now to survive.   It is not all gloom and doom, I do not feel as tired as I did a month or so ago and my body seems to have adapted to the pressure stocking. I  just can't comfortably do stairs. I still have the Lymphoedema, I still have problems with the cut muscle but I am definitely stronger and better at walking now and I hop in and out of bed more or less the way I did before the lymph dissection which is a blessing. The sad thing is that again due to the Lymphoedema my travelling days are over, I cannot fly for any more than four hours. I live on an Island, I know it is bigger than Europe and Asia combined but it is still surrounded by sea (or girt by sea as our National Anthem says) and so flying is the usual way to travel.   So my plans for Spring and Summer don't include a lot of traveling. In fact I don't really have a plan at all which is most unusual for me. But that has happened in the past and some fun things happened anyway. So no sense in being sad, I need to have a positive attitude to life. Okay so that is not going to happen every day, I'll still have whiny days and blue days but I'll try to make some good even great days. I went to an 80th birthday party last Saturday and thoroughly enjoyed the day. Fun is where you make it happen.   School holidays are on now, the mid-winter break so I will get to see the three grandkids who come and stay with their Mum Pam and maybe have my daughter and family here for a day. I haven't seen them since the  end of May. Funny how you long for your kids to move closer and when they do you hardly see them. As the old saying goes: " We all have busy lives." Well Ray and I used to have them too at their age but we still made time for our parents. It is a different generation with different priorities.   Hope I don't sound too down. There is a lot of good dayvs ahead of me I am sure and when the days get longer I will be out in the garden and hopefully out with friends. When the sun is out the neighborhood is alive with kids playing, dogs barking and the usual working day noises which I do enjoy when the front door is open and the sounds filter through it. It is on those cold and gloomy days I suddenly feel that loneliness creeping up on me. So I am really looking forward to longer, warmer days to come in another six weeks or so.  

HostSue

HostSue

 

wasted days ad wasted nights

Good intentions failed, or at least in transitory hiatus.   I had felt fairly confident in my situation immediately following my stroke and recovery.  I am still moderately functional, and with the lifestyle I led pre-stroke being essentially sedentary and reclusive I imagined a post stroke existence not remarkably different.   The mind that perceives is the mind that deceives.  Reality is setting in, with an attitude of vengeance.  The VA approved me for 8 physical therapy appointments, but after 5 visits, thoroughly discouraged and disgusted with myself, I gave up.   I was seeing or feeling no progress, and my therapy was routine and regimented, so I just figure I would save the travel and just do the exercises alone, at home, however,,...   Motivation and self discipline are not playing nice together and I am slipping into a pre-depressive slump of staying up all night binge watching on Prime and Netflix.  My mind admittedly slips toward the abyss leading to that dark place from which return is dubious.   My optimism, good spirits and attitude have deserted me and I have begun contemplating an unsatisfactory future.   Woe is me, but for now I'll make an effort, minute by minute, day by tedious excruciating day, to continue.   That is, for now, my hope.

beingnobody

beingnobody

 

Anxiety/Panic attacks are so exhausting

I've been visiting my sister since July 4 and I've really enjoyed it. Today is Saturday and I will be going home at some point today...it's about an hour away. My brother-in-law has 4 children and they are here every other week...this week. I really enjoy being around them but they all can be disrespectful and mouthy to their dad and my sister so I know at times things get a little rowdy. Today is a day that they all use to clean and work on projects. The girls (I keep them every other week) were particularly irritating and didn't want to do anything. I never have this problem with them and my sister had surgery earlier this week so I took it upon myself to try to turn the table and get cooperation. Well I am not a screamer and I have a different way obviously of parenting (I have to remember I am not their parents) and my help wasn't taken as helpful I guess so I was shooed away from their room. So I began to vacuum the wood floor upset already even though I didn't need to be. But I could hear my sister and her husband screaming their demands and disapproval to the girls and I couldn't stop the anxiety from taking over. I turned off the vacuum and went outside because I was pouring tears and just felt my whole body so uneasy. My sister came out and said are you trying to get some peace and quiet and then noticed I was uncontrollably crying. She immediately said you don't have to vacuum. I told her I liked vacuuming and then she said it's ok Murrey was just telling Miller to brush her hair and she doesn't like it and then went back inside. She doesn't understand why I lose control and for me it's not ok. It's taken me roughly an hour to get myself calm and I feel like I have run a marathon. I just prayed and swayed...Please Lord help me to not have this reaction in front of all these family members. It is embarrassing and I don't like it at all. I really hate that I am not in control. It scares the kids. It confuses my sister and her husband. I just want to go to my room and close the door and shut down...but I am not home. This too shall pass.

tmciriani

tmciriani

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