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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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abalation

heartI wish I could write more but my thoughts don't stay in my brain long enough lol   Well yesterday , July 2nd, I had my long awaited cardiac surgery consult.  I am waiting for the office  to call and schedule me for the same day surgery. They are going to do an ablation for my SVT ( fast heartbeat) :: from the start of my post, I had to leave and drop my son off at his house, stopped to see my ex father-in-law (I adore that man :) ) then to Target to get cat food::  I now have a date August 14th. Same day so only sleepy for the rest of that day. My mother or a hospital car service will pick me up for the procedure.  The reason I'm having this, at an early age, is the premeditative tips I was given to help relax ( i.e. barring down like a bowl movement, putting face into ice water, laying down, a beta blocker) aren't able to slow my pulse or to end the event. I also am given intravenously medicine that normally calms the heart and if that fails, one that basically stops your heart, like a jump start, and immediately an injection of adrenaline to start it up, to no avail. The next action is to use the paddles to shock me. It happens to much to just wait.   Basically, you have a circuits in your heart. They have a route that they take to continue working, mine has a short circuit, kinda. It's common to have my issue. Most start as a flutter and maybe continue for 5-15 mins. Mine don't stop . You can't die from SVT but what they don't tell you is while my heart beats at 235-240 BMP, blood isn't being adequately sent to the rest of the body and having a stroke in my history... I want to get this treated.  and bonus is.... I CAN ENJOY MY COFFEE AGAIN       

ksmith

ksmith

 

Family Reunion Trip

As much as I dreaded the long drive back to Colorado, I knew I had to take Gary after his sisters planned a family reunion for the day after the 2 yr. anniversary since our son's death.   We also had not been back to Colorado since his memorial service so had not seen (in person) the headstone on his final resting place.   Carmen, Gary's current caregiver, went on the trip with us as I can no longer travel any distance by plane or car without help.  Gary has gotten more stubborn about doing his share to help with transfers or cooperating in any way when traveling.  The whole trip, he absolutely refused to sleep in the car while Carmen and I did the driving.  As a result, each time we had to get him out of the car, it was more difficult and more strain on us without his help.  We made a lot of stops, leaving him in the car while we took turns making our pit stop or grabbing food on the go, and used a plastic cup for him to pee in and dumped it when one of us went to the bathroom.  It was a real pain having to put the visor over windshield to block out any video monitoring equipment at gas stations or parking lots, so we wouldn't get arrested for exposing him as we tried discreetly to hold the cup for him to go.      We spent the first night in Santa Fe, NM at a Comfort Suites with less than adequate handicap bathroom...bathtub instead of roll-in shower and of course the grab bars and pull down bench were on the wrong side for him to be able to hold on with his left hand, so he got a wash up next morning instead of a shower.  If it were just the right side paralysis that he had to deal with, it would not have been a problem, but the lack of trunk control as well as double vision, makes it impossible.  We had five nights in Colorado at a Comfort Suites with the same problem, except they did give us a shower bench to put on opposite end of tub so he could hold on to left side grab bars.  We still struggled to get his legs over the edge of tub and getting him out was equally as difficult - thank God there were two of us doing the work.   We went to visit Dan's final resting site on the 22nd - the 2 yr. anniversary of his death.  We also stopped to visit Gary's parents grave sites and cleaned up the headstones and placed flowers on both sites.  It was chilly and windy out so I did not get Gary out of the vehicle - he could watch Carmen and I from nearby in the warm car.  We met up with friends afterward for lunch at the local Perkins and did some catching up with them.   Our granddaughter came by the hotel later in the afternoon and I was able to give her some jewelry items I had been hanging on to for her and her brother, and we had a nice visit.     The 23rd was the family reunion picnic, and also Gary's oldest brother and his wife's 56th anniversary.  This is the brother who was diagnosed a year ago with mesothelioma, and the first time we had seen him since he has been through several rounds of chemo.  He is doing as well as can be expected with the type of cancer he has, and doesn't look like someone who has cancer.  All three brothers and their wives attended as well as all three sisters and two of their spouses.  The oldest sister was there, but her husband no longer likes to travel so did not attend.  Many nieces and nephews and great nieces and nephews were also there.   Our oldest son showed up with a wonderful pork tenderloin that he had smoked on his grill, so we had to try some of it.  Overall, I believe there were 75 in attendance - an amazing turnout for such short-term notice.   A few hours into the picnic and Gary was already showing signs of exhaustion, so we lasted until about 4 p.m. - that was a good day for him since he had been up since 9 a.m.      On Sunday we went up to the casino with our son - it was the casino where our youngest had worked for over 9 years, but I didn't recognize any of the employees and we had not been there in over six years, so things had changed somewhat.  The only thing not changed was the machines being as tight as ever.   lol    We also had a chance while in Colorado to visit with our oldest grandson and his girlfriend and a couple cousins, one who has pancreatic cancer is going through a rough time right now and hopefully will start chemo soon.   We headed back home on Monday morning around 7 a.m. and bypassed Denver using E-470 - almost 9-10 miles out of our way but avoided the rush hour bumper to bumper, stop and go through I-25 to get to the south end of Denver.  We made great time to the border of Colorado/New Mexico and stopped only once for gas and another for a quick picture for Carmen at the border, and she drove the majority of the day until we finally stopped in Payson, AZ that night around 8...long day for all of us  and Gary was totally exhausted.   We stayed at a Quality Inn and headed out early the next morning to Scottsdale to check on our mobile home that is listed for sale, and then back home to Coolidge, AZ.    Misha was more than excited to see us home again - and his dog sitter was anxious to get her money and get out.   lol    

SarahR

SarahR

 

New Gifts

ok, so the pain hits at 5pm on time like a train. spasms too. so they give me the world's tiniest pill with the world's largest pill. That is my oxycodone paired with my glucophage. simply because it is before dinner and the nurse already must visit me twice in an hour. twice a day even because an hour after oxycode comes the oxymorphone.  Can this be spaced out a bit. Well in between comes lyrica at 2 and 10pm. but the 10pm actually comes at 8 with my bedtime insulin because I am freakkin wirh pain these days because a RFA is the real pain killer or perhaps the spinal drugs. Even they do not know. Is it electricity or it is pickling nerve spaces in drugs. But certain is that pretty pinkish...and the 3 pills are varying lipstick shades of pinky.orangish. kinda orchidytigerly brownish capsule. BUTthese in a timed daily regime cocktail only gives me a faint edge off screaming about the levels of pain I feel. Which aggrivates people who come running not because I a fellow hurt and not becauae I may wake napping neighbor BUTthat a state supervisor here for sweeps may hear me and pop out the timer on his cell while appearing to read a text for dinner plans and slowly answer But he really notates the response to scream time.Well I know that they ask people in the business office and physical therapists to answer the call lights only to turn them off. This is tricky they pop in and say may I help you Mother. I was here a while before I realized this was not an insult. They call everyone here Mother or Uncle out of Respect. So then I say have we met? I make small talk and then ask for whatever. And by then sometimes forgot...but they reply: I'll tell your CNA. By now my call light has been off an hour and I am engaged and not more needs with more call lights. So..this year I play a smarter game. I say I WAnt My CNA. That saves lots of time. No happy PR stunts for me.   Ok so a really nasty annoying obnoxious nurse that I just refused to say anything bad about because she would end a sentence with you can have the supervisor take care of you. And I would say naw yall doin jes fine. And so she had to deal with it. She  left today and we disagreed about my insulin as usual. But she gave me a bag of pretty hair bands clips and headbands and Bath soap and lotion from the best soapshop ever and included a mini tote bag to keep it in. I cried over the lovingly chosen personalized gifts that she told me she bought because she truly believed I would enjoy it and not because I was upset at her. Well I would not have pegged her as the type to bribe a hug and she caused me trouble again today and did not stop by to say goodbye. I showed it to others and they said oh so nice. Ok so yes it is nice to hear that she truly enjoyed taking care of me. But honestly I cannot say that she was best nurse. I never wrote her caught you caring. I looked forward to her days off. I cringed hearing her voice say my name to wake me if I fell asleep after being given my 6am then 7am pain pills. two things happen.I either get up in pain ask for hot morning drink to watch movies OR I am in bed passed out from the drugs then awakened suddenly out of sorts from a drug dream. like those vivid real ones. me exhausted. Saying no not ready to get up yet. Saying please do not ask me on the hour.let me sleep until my next dose unless you see me up assume I was not ready. No I am not lazy. Sometimes I was up until 5am pain dose because it felt like my leg was being cremated. NO she and I were never kindred spirits. We never shared That Laught That moment. I hardly knew her. See here I meet all sorts and a very few we share and I know it. What the heck is it to be given a gift from someone who says I know you are upset at me right now but I didnt want you to think I bought it because you were upset at me. Wait dont we do exactly that. And maybe wait for a better time. Maybe wait for the last day then. It felt incongruent to accept this gift. feel happiness.yet annoyance at her.the situation.  In fact I almost did not accept it. My immediate reaction was Oh 0no you did Not. I shook my head. She says I can donate it if you dont want it. I said No I am not going to be like that. I accept it and from what it means and I held out my arms. Her happy face showed me her sincerity. In a second she almost thought her kindness was refused. What kind of prideful fool dismisses such love. AND yet I am so happy she is gone. I will not miss her. I miss others like the one she replaced...and all I can feel is gratitude for the gesture...not really sure what it was. I feel guilt. Like I broke up with someone again who was not relieved like I was....or turned down scout cookies...no creepier. I feel like I uprooted flower beds  I feel like I am happy a nurse is leaving after she gives me really thoughtfully picked out gifts. And that others know her sweetness but I am that..... well maybe I do not understand her compassion that she had for me or her experience. Do we know our effect upon or how they live right around us sometimes.   I feel sad bad for not liking her not a bit. And I resent her even more. Some unreasonable wasteful part of me wanted to donate it even after I took it. But I like the stuff. Then I tried to give it away. Of course they not allowed to. But I even hate liking this summer lotion. expensive products.   Yes and resent that she goes away to live a life and mine stops here. I think that way. jealous of visitors who come in with new purses. One lady at bingo heard me say I have not shopped for a purse in ages. She said I wonder what that would be like. I said not like before. We shared a wistful sigh. yes her bag looked worn. Truth is I bought one online last year. Not the same. not that mother daughter powerlunch or dinner because we did not have dates. Finding a purse was a high for me. I would use it feeling euphoric for a long long time still proud of it. For some shoes. not me. A bit. Purses marked my life. Tell me a time and I know what purse. My friend never used one. She feels nothing about such things.   Ok so Mama said never look gift horse in the mouth...but what about the gift giver

SassyBetsy

SassyBetsy

 

finding purpose in life

I struggled big time after my stroke thinking why did I survived my  stroke in such a bad shape, what's the purpose of my life, having young family at home gave me courage & strength to fight on, in my mind I always thought God wanted me to be around for our young son & hubby, my sister joked at that age of hubby it would have been difficult to find him new wife too lol, which used to crack me up till my college friend reminded me, he got dove so it wouldn't have been too difficult for him, so joke was on me, but anyhow I thought purpose of me surviving was for them. I don't have any clue whats the purpose of my life any more. Though I now don't worry about it either, I just take one day at a time & have fun every day. I enjoy my life to fullest. I enjoy nature, my walks, my friends, my family, everything. I read great line by Tao Chinese philosopher, which says one who persists is a person of a purpose, which makes full sense to me, I persisted right after my stroke thinking about my young family, today life is fun & meaningful in everything  I do.   Asha  

achandra

achandra

 

My Ups and then My Downs

I hate that I can leave a positive post one day and then am miserable and need to let it out (though it may be negative) the next day. My moods and emotions go from one extreme to the other even though I see my Psychiatrist every 2 months and am medicated with what has worked the best so far. I still can't control it at times. Ughhhh anger/frustration/depression/feeling alone/feeling like nobody...and I think to myself why do I let something so simple so nothing sometimes to affect me. It just does...whether I am aware or do things to prevent or control it...whether I try coping skills or positive self talk. I can just end up in a blubbering mess of lonely tears. Here is an example: My dad is finally selling an older model Monte Carlo that sits under the two car carport and never moves to my nephew. I was shocked and utterly excited. I was so happy that nose I could park under the carport because the birds use my car as a bullseye or their lavatory in other words and I have difficulty finding the energy or coordination to wash it myself...oh and I am unemployed and broke always (still working diligently on disability). That means no car wash places for me. Ok back again to the parking situation. If you don't already know let me explain that I live with my dad while I am going through the disability process. Anyways, I was so thrilled that I could park under cover. My step mom smiled and spoke loudly to my father (he can't hear a thing) about my excitement and he promptly said noooo you put your suv under there. My stepmom has 2 vehicles but doesn't use her suv. His reaction hit me like a ton of bricks which I think is crazy on my part. I immediately welled up with tears and felt so alone so invisible. I finished cleaning the dishes in the kitchen where I stood and then scurried to my bed to log on and release this yucky. I'm probably taking a nap in a few moments to refuel. Again this is me using my blog as purgatory. Maybe in a couple of hours I will do something fun.

tmciriani

tmciriani

 

Neurologist Speaks at My Stroke Support Group

Tonight I went to a special stroke support meeting where a stroke trained Neurolgist was our guest speaker. Even after all I have read and been through it was really an enlightening experience. As I listened to some statistics it made me feel so sad inside. I truly wanted to cry for myself and the many many thousands that experience stroke each year. That doesn't even include the many many thousands who are just affected by someone they know or love having a stroke. Did you know that 795,000 Americans will have a new or recurrent stroke this year. This only includes Americans!!!! Stroke is the #5 cause of death in the US, killing more than 133,000 per year. That is 1 in 20 deaths. More than 690,000 per year of US strokes are  caused when a clot cuts off blood flow to a part of the brain. IV-alteplase can be administered in select patients within 4.5 hours of stroke onset. Mechanical thrombectomy (much newer and the newest research and procedure) can be performed up to 24 hours after stroke begins in select patients. Learn and share the warning signs of strokes (not all but most kinds fit this). Spot a stroke F.A.S.T. F~face drooping...A~arm weakness...S~speech difficulty...T~time to call 911. Don't wait remember the T.   I encourage you to visit www.stroke.org and click Menu and then Understand Stroke. Be sure to open all the blue subjects with arrows beside them and refresh what you probably have read before. Even though, it is still staggering. Like I said before these statistics are only for the US. Well I know so many of you who are from other countries. The magnitude of this realization is unexplainable for me. The impact is mind blowing. In the US, stroke is #5 cause of death and #1 cause of long term disability. Speechless.   I had several questions for the Neurologist concerning my own type of stroke in the posterior region of brain blood flow. I had a cerebellar stroke (2% of all strokes and probably less % for mine which was bilateral). Just as I have found within the medical community the cerebellum is the least known about part of the brain. For more than 20 years there has been much research into the higher learning affects cerebellar damage can cause. I was diagnosed with Cerebellar Cognitive Affective Syndrome during my second year post stroke by my Neuropsychologist. This syndrome is a much studied and debated subject. Many physicians are either unaware of new findings or fail to accept and follow the progression of research. This makes it really difficult for someone like me to get consistent up to date care...the Neurologist acknowledged my concern as truth. I was emotionally overwhelmed at the moment. Validation is life changing sometimes for a stroke survivor. I personally thanked him after the seminar and he gave me some Medical contacts that could be truly beneficial for my issues and background. This was a most informative, and truthfully enlightening seminar. I just had to share.

tmciriani

tmciriani

 

Setting Aside The Doctors Orders

I am swelling so badly, my edema is not pitting but walking is painful,like on rocks on the bottom of my foot. I cried. I wear a circaid juxta support stocking thing,but it still swells. The cardiologist changed my diuretics from lasix to bumex and spironolactone.  And so then she said nothing can help me because too much diuretics can hurt kidneys. Yes I elevate,but sometimes I sit with legs down because I get up and down. Then I lie down elevating, which puts my leg to sleep,foot tingling. Only 1 foot,the one on painful leg is numb.   So, the doc here at the home put me back on lasix,and I will not be taking what the cardiologist prescribed. Ok, so I was on lasix for a while and wanted something better,and look now I need the lasix again. I will report this to my primary again. See what she says,but the doc here sees the problem and just set aside the doctors order. How can I put my trust in any of this.   I worry not following the advice of a cardiologist. But according to her no cardiac problem now. *Plus I am on a no salt diet right? but I am taking processed ham off the chef salad, ask for a fruit plate when the food served is ham or something salty like sausages.   Sigh. So back to Drawing board.

SassyBetsy

SassyBetsy

 

irony bite

Isn't it odd, in this time of technological marvel and information overload, that so much of the material we access online is so outdated?   Along with my recent stroke I am also a throat cancer survivor, approaching my 3 year remission anniversary on Sept 29.   I found that when I was first diagnosed and started researching my situation that the majority of the data online regarding  prognosis and such,.. You know, The ultimate question of "how long do I have?" was so outdated.   And I mean really outdated.  Like a decade outdated, according to my doctors anyway, who still to this day warn patients against relying on information gotten from the internet pertaining to nearly anything medical.   Same thing I was told by neurologists at the VA when I was recovering from my stroke.   Doesn't seem fair.   It seems like information would be updated or more current... but yet...I follow a lot of medical journals and medical social media and it seems like even when information from a "new" study is published or posted online, that deeper scrutiny ultimately reveals in many cases that what is being currently posted is really just something that has at it's base a pretty ancient (relatively speaking) point of origin.   Late night/early morning musings.

beingnobody

beingnobody

 

Is Anybody Listening??

I went to my cardiologist today because I called last week telling them since she cut my diuretic, I am swelling,so then when doc got message,she had her nurse tell me on Wed to get lab work Thurs and come to clinic on Friday at 8:40 for evaluation. So I luckily could have my blood drawn at the home, but unfortunately they never sent the results to the doctor so during the exam they did... But the story starts with this:   BUT when I arrived to the office I was so tired and had leg pain so I sat down in waiting area and asked if I was at the correct place because the nurse had given my transportation the wrong address...another story....and the office clerk came over to me saying no they did not find any appointment  for me...   SO I told the story of being called and instructed to come in for this 8:40 appointment, so please try and find the nurse or the doctor....
....then the office clerk said, well if you will let me finish, you do have an appointment in August.
...I said did you hear what I said about the nurse calling me telling me to
 arrive today at 8:40?? I said wait I will write it down. And I did. I said please take this and help me. She said There is no appointment today.And she told me I could keep the paper I wrote out.   When I am stressed out, I breathe shallow, my chest hurts, I get dizzy, there is a rolling vision and sensation, I find it impossible to choose the right way to get my thoughts across, I feel physically ill. No, this is not a panic attack. This is a stroke attack. All my deficits become more pronounced. This is not a mental state you can avoid,this is another stroke by product. And once here, now I have the crisis that stressed me PLUS my stroke stuff. And then it is all about coping. So do not think I am weak getting all flustered. I am handling war of the worlds in 3D one handed blindfold. But it hurts, I start to cry and I hate the universe for all of it.

So I felt devastated that she was not hearing that this appt was made 2 days earlier by a nurse there. I mean, can someone go check with someone? Can they believe me. Can they listen to me saying that I did not just decide to come see the doctor. But that leaves the rest even more interesting If I was an insane or utterly confused person because what I did was instinctual. I called over to the front desk and asked if the other two women could help me, and I explained. So one came over who asked me to lower my voice. oh yeah, strokeything for me, I do not even realize how loud I am, or maybe I had to be heard when she was over 6 feet away in a huge echoey room with other front desks for procedures. But she did not stay to talk, she just said she would look into it. I was satisfied to wait until they discovered the doctor requested my presence.

 But then she announced Nope No Appointment. Ok, I think we established the computer did not show my appointment. I said,Please ask. But then a familiar nurse came out calling for a patient. I asked her if she had called me,isnt she my cardio's nurse? She said sorry we rotate.I do not know.
 I could not even thank her because the second clerk waved the nurse away sayong they were handling it and telling me to not disrupt the office. Excuse me, that nurse took me in last time,processed my vitals,etc...and I can tell you about her family...and I assumed the doctors had particular nurses...but it was my plea, an alert that I was out here needing help. I told the clerks they were being rude and asked why they ignored me, and it was 8:50 and I wanted the doctor to know I was there.
And a third clerk said loudly, when can I get in on this?? The other one said not to, but she lit into me calling me rude for calling the staff rude. ok now, nothing like a crowd to egg you on, and the third clerk  was a crowd of 1 who was an instigator.Not to jump in and help talk to someone, but to tell me off, insist I have no appointment.

So frustrated and tearing up, I called the phone number to the cardiologist and explained I was there as instructed by the doctor's nurse,but the clerks said I did not have an appointment, and it was past my appointment and pleaded for help. She said you have reached the call center, but let me try and help you by calling someone. I waited, hearing one of the clerks mumble that I was on the phone right now, and I was expecting one of the clerks to spoil it...   but then a nurse came up talked to the clerk,looked at computer...and I sat demure, honestly desperate to see the doc....and a smiling  nurse,an office supervisor came to me telling me a miscommunication had occurred....ya think...and there was no problem with me being seen,in fact someone was coming to get me. I silently absorbed the I told you so moment and said a simple thank you, then called my medical office's "we listen"line and Talked until I was called to walk in the back, then asked to be allowed to finish that call before they did the vital thing. The woman on the other end is suppose to be compassionate and settle you down, but I said I was making a complaint and I did not want someone to say nice things to me. I wanted to hear that an action was taken,people talked to because I am a disabled person who was treated horribly. And I said all I wanted was someone to come talk to me and believe me, and I wrote that and the clerk never took the paper telling me oh you hang on to that.
The person on complaint line said she will follow up. Do I care?Do I believe they actually do anything. Is that just to make patients believe someone listens.       But most important, I saw my cardiologist, no word mentioned about that stuff, she examined me,reviewed labs, and said heart failure was not reason for my swelling,and no I cannot increase diuretics due to kidney caution.  I got good news. But I need a sleep study next.   Maybe they blew me off....
but I live in a home,use transportation....a fine oiled machine is that process of getting me off to a doc appointment.

But what if I had been there on the wrong day..

and confused,worried. And then the clerk sighs,rolls her eyes and says can I finish.
Is that what you say. not me. I would say oh no, lets see,lets ask, and if you need to come back,do you have transportation home now,can I get you some water because I know this can be stessful.
Nah,that is too humane for this TrumpeterTwitter Era of those workers there for a break not a career.

oh so I went on a rant.
pour me a drink.

SassyBetsy

SassyBetsy

 

Is Anybody Listening??

I went to my cardiologist today because I called last week telling them since she cut my diuretic, I am swelling,so then when doc got message,she had her nurse tell me on Wed to get lab work Thurs and come to clinic on Friday at 8:40 for evaluation. So I luckily could have my blood drawn at the home, but unfortunately they never sent the results to the doctor so during the exam they did... But the story starts with this:   BUT when I arrived to the office I was so tired and had leg pain so I sat down in waiting area and asked if I was at the correct place because the nurse had given my transportation the wrong address...another story....and the office clerk came over to me saying no they did not find any appointment  for me...   SO I told the story of being called and instructed to come in for this 8:40 appointment, so please try and find the nurse or the doctor....
....then the office clerk said, well if you will let me finish, you do have an appointment in August.
...I said did you hear what I said about the nurse calling me telling me to
 arrive today at 8:40?? I said wait I will write it down. And I did. I said please take this and help me. She said There is no appointment today.And she told me I could keep the paper I wrote out.   When I am stressed out, I breathe shallow, my chest hurts, I get dizzy, there is a rolling vision and sensation, I find it impossible to choose the right way to get my thoughts across, I feel physically ill. No, this is not a panic attack. This is a stroke attack. All my deficits become more pronounced. This is not a mental state you can avoid,this is another stroke by product. And once here, now I have the crisis that stressed me PLUS my stroke stuff. And then it is all about coping. So do not think I am weak getting all flustered. I am handling war of the worlds in 3D one handed blindfold. But it hurts, I start to cry and I hate the universe for all of it.

So I felt devastated that she was not hearing that this appt was made 2 days earlier by a nurse there. I mean, can someone go check with someone? Can they believe me. Can they listen to me saying that I did not just decide to come see the doctor. But that leaves the rest even more interesting If I was an insane or utterly confused person because what I did was instinctual. I called over to the front desk and asked if the other two women could help me, and I explained. So one came over who asked me to lower my voice. oh yeah, strokeything for me, I do not even realize how loud I am, or maybe I had to be heard when she was over 6 feet away in a huge echoey room with other front desks for procedures. But she did not stay to talk, she just said she would look into it. I was satisfied to wait until they discovered the doctor requested my presence.

 But then she announced Nope No Appointment. Ok, I think we established the computer did not show my appointment. I said,Please ask. But then a familiar nurse came out calling for a patient. I asked her if she had called me,isnt she my cardio's nurse? She said sorry we rotate.I do not know.
 I could not even thank her because the second clerk waved the nurse away sayong they were handling it and telling me to not disrupt the office. Excuse me, that nurse took me in last time,processed my vitals,etc...and I can tell you about her family...and I assumed the doctors had particular nurses...but it was my plea, an alert that I was out here needing help. I told the clerks they were being rude and asked why they ignored me, and it was 8:50 and I wanted the doctor to know I was there.
And a third clerk said loudly, when can I get in on this?? The other one said not to, but she lit into me calling me rude for calling the staff rude. ok now, nothing like a crowd to egg you on, and the third clerk  was a crowd of 1 who was an instigator.Not to jump in and help talk to someone, but to tell me off, insist I have no appointment.

So frustrated and tearing up, I called the phone number to the cardiologist and explained I was there as instructed by the doctor's nurse,but the clerks said I did not have an appointment, and it was past my appointment and pleaded for help. She said you have reached the call center, but let me try and help you by calling someone. I waited, hearing one of the clerks mumble that I was on the phone right now, and I was expecting one of the clerks to spoil it...   but then a nurse came up talked to the clerk,looked at computer...and I sat demure, honestly desperate to see the doc....and a smiling  nurse,an office supervisor came to me telling me a miscommunication had occurred....ya think...and there was no problem with me being seen,in fact someone was coming to get me. I silently absorbed the I told you so moment and said a simple thank you, then called my medical office's "we listen"line and Talked until I was called to walk in the back, then asked to be allowed to finish that call before they did the vital thing. The woman on the other end is suppose to be compassionate and settle you down, but I said I was making a complaint and I did not want someone to say nice things to me. I wanted to hear that an action was taken,people talked to because I am a disabled person who was treated horribly. And I said all I wanted was someone to come talk to me and believe me, and I wrote that and the clerk never took the paper telling me oh you hang on to that.
The person on complaint line said she will follow up. Do I care?Do I believe they actually do anything. Is that just to make patients believe someone listens.       But most important, I saw my cardiologist, no word mentioned about that stuff, she examined me,reviewed labs, and said heart failure was not reason for my swelling,and no I cannot increase diuretics due to kidney caution.  I got good news. But I need a sleep study next.   Maybe they blew me off....
but I live in a home,use transportation....a fine oiled machine is that process of getting me off to a doc appointment.

But what if I had been there on the wrong day..

and confused,worried. And then the clerk sighs,rolls her eyes and says can I finish.
Is that what you say. not me. I would say oh no, lets see,lets ask, and if you need to come back,do you have transportation home now,can I get you some water because I know this can be stessful.
Nah,that is too humane for this TrumpeterTwitter Era of those workers there for a break not a career.

oh so I went on a rant.
pour me a drink.

SassyBetsy

SassyBetsy

 

On Being Appreciated

Sometimes it is hard to accept compliments,but they feel good, but do you believe them or consider them deserved.  There is a nurse who always always admires my coloring. One time she asked if I colored people,so I put a lady with a peacock up on my wall.  So she looks at my books, tells me that choosing just the right colors is my passion. She says I am an artist.....always saying she is a fan, saying she boasts about me to her family.
she is my age, very nice med nurse who works overnights.  So I gave her the lady picture. She wanted me to dedicate it to her, so I wrote to linda with love from my name. and she said she appreciated it and wanted to frame it. she was...the word is overjoyed. wow.
unexpected. but she said she is a fan. wow.
I appreciate her noticing and enjoying.
In fact, it was honest. that lady was one of my best ones,
reminded me. so best I gave it. what a nice flattering surprise.🤗   I must admit I think coloring is fun therapeutic, but I do not take it seriously, I take it for granted, just a way to pass my useless time, never dreaming in a million years that someone,anyone would want it. It seems embarrassing to show my book).  And I must admit I am tickled pink!🤗   Now I guess this wonderful moment is a soothing healing balm on my soul for a "wronged" thing. The activities director here gave me a beautiful coloring book once, then she invited me into her office and allowed me to go online and choose books for myself and another lady, along with new pencils, sharpeners,erasers. Excitedly I waited for them to arrive. The other lady, said, I'll believe it when I see it. I explained we received activity things here as part of the program. I frequently checked in to see if the gifts arrived, so the director told me to just wait until she notified me. Yup, that day never came. When my son heard of this, he offered to buy our supplies. So the other lady learned that some people do thing for others even when they do not know them, and there is such thing as Free. When she passed, my son reminded me that I had brought some joy into her final days.I think he did that for both of us. I have one of her pictures on my wall. The one she was so proud of.  So, now nearly 2 years later, after seeing new people get coloring supplies, I went to her and asked for one of the books from my favorite author and a set of new pencils. She popped out her tablet and generously offered to buy me 2 books. So the very next day she brought me a smaller set of pencils,but still nice that she found when she went to Costco to buy supplies for a party that day. She assured me that the coloring books would be delivered overnight. That was two months ago.  I have seen and talked to her since,but I never ask about the books. I try not to choke when I hear her say,I am good for my word.   Thankfully I do not rely on her for my art supplies. I buy things and I receive gift boxes with books and all kinds of pens, most of them I give away since I prefer pencils and pass the word. I tend to use up my favorite colors from multiple sets.   Oh well now this is not being appreciated.she has never looked at my work,books or commented on my wall art. She is nice,friendly, they use her for things, I like her But, she is not my fan. I cannot believe she would do this to me twice....  

SassyBetsy

SassyBetsy

 

Wearisome

I have previously mentioned that I have a reclusive nature, but since the stroke I am beginning to realize my perception of my reclusievness was more personal choice than I was admitting to myself. Now, post-stroke, with my newly acquired limitations of dexterity, I am faced with more a forced state of semi-isolation.   It's an eyeball opener.   I realize now that pre-stroke I still had the choice at any time to venture forth into society, but now that is not the case.  Now I am dependent on a driver to leave home property, and even though I most move freely at home without assistance of cane most of the time hobbling, limping and gimping about, that I lack the nerve or confidence doing so in public.   Thus I rarely go to any location that does not have the little handicapped scooter/cart thingamajiggy.  I do really enjoy these thrice monthly excursions with my sister, but otherwise I rarely anymore leave my room at all other than a few times a week venturing out front to the driveway, which is expansive, and sitting on the veranda just watching nature.   In my room I sit most of the day in front of the window getting plenty of sunshine and fresh air, but little physical exercise..   I have ordered all these physical rehabilitation aides that I never use but I do try to use my hand as much as I can.   Problem is I don't know if I'm coming or going anymore because my schedule has been so compromised.  My sleeps routine has turned into a veritable *beep* show and it is, I have to admit, dragging my spirits down low.  The recent high profile suicides lay heavy on my mind, because I can so relate to the conditions precipitating these sad endings of life.   The only way I can get a restful sleep is to finally in the wee hours of darkness submit to the swallowing of a portion of a Trazadone, maybe half a Vicodin and a muscle re;azer then talking to the magic dragon.   This typically knocks me out until my regular schedule begins with my sister bringing me my every morning two eggs/ smokey link sausage and toast w/jelly and a glass of ice milk.   This rant, if you have not yet figured it out, submitted at 3;30am-ish, is a prelude to my consumption of above and respite from insomnia.   Oi Vey, as they say in the motion picture machines

beingnobody

beingnobody

 

A Day In the Life Entry

It's been a different spring into summer this year. Things are just different. It's been a year since I moved from Nashville and away from who I thought I would be with forever at one time. I see my Psychiatrist every two months and tell him every time that my dreams haunt me. I dream about Adrian almost every night...not the "I want to be with you" dreams but dreams that don't feel good. I can't explain...My dreams can be scary real feeling since my stroke many times I have to wake up well before I realize it's not real. They can also color my mood for the day. I also have unavoidable thoughts of him constantly. Again not the "I want to be with you" thoughts but just in my mind thoughts. I physically try to stop them. My Dr. says it's called rumination and a part of my anxiety disorder. He told me when I get my disability and insurance happens we are going to get me into cognitive therapy which will help me cope better. I guess that is another thought that goes through my mind constantly...Will my disability hearing be positive. I am scared. I hate to admit that but I am. Today I started watching my two nieces every other week for the summer. They are good kids and if they get a little rowdy I just talk to them about how it affects me and they are always eager to make the moment better. I have to admit though that even though we relaxed and had a calm day I am still blah. It means that I feel more exhausted than usual, have a headache, stuttering, dizzy, just good old brain fog and have had to lay down just to rest...still need dinner and meds and getting ready for bedtime before sleeping. It's been super hot this year...It seems more hot than I remember for a good while. My body does not like it. Fibromyalgia...heat, stress, weather, getting sick, and a plethora of other things can set off a flare. For those that have this....My shoulders, neck, back, hips, elbows, knees, stomach are all unhappy the past few days. I am tired of my whining lol...oh well at least my blog doesn't have to be for everyone sometimes just for me. I have fallen down the stairs again...but I have to do laundry (it's downstairs) lol thankfully no tumbling just missed a step. One great thing is that I have slept through the night for the past 4 days! This is a fantastic achievement because my sleep cycle has been way off for 6 months now. I'm stoked! It should only get better from here since I will need to be ready for the girls by 7:30am at least every other week. This blog is so random...My apologies. I've had so much on my mind lately and been a bit moody so I just have to let it out. My dad has to get a biopsy on his lung (a spot on) next week. Already had a PET scan and it's suspicious. The wonderful thing is that he hasn't smoked in 5-6 days! That is major because he has smoked since he was a teen and he just turned 75...even after a heart attack and 5 bypasses he still wouldn't quit. I'm praying this will last. Not only does my father need a biopsy for lung cancer but also has COPD now and is on oxygen. I'm trying to tell him and myself that there is nothing we can do right now and worry will be useless but that is easier said than done. I just pray. As for my summer may I find some time and energy for fun...make some new memories.

tmciriani

tmciriani

 

I have read this but now know for sure being thankful or kind to others is gift to yourself

I have read about it, that doing gratitude journal  & being nice to others are easy happy feelings booster. I will  do my gratitude journal whenever I remember from time to time, but never knew even thank you letter can bring out such a great happy feelings. In my post stroke journey I have encountered ton of doctors most were very nice to us some had better bedside manners than others, but my cardiologist who sealed hole in my heart was way kinder to me & will always have special place in our heart. We are all very thankful to him, & today after 14 years when our son starts writing his  medical college application essay & he still remembers cardiologist who did innovative surgery on his mom with minimum downtime. It reminded us of great doctor with amazing bedside manners & who had  kissed me on my cheek during our consultation visit with my husband after listening to ordeal we had gone through & now came to him for alternative surgery instead of open heart surgery to fix that hole in my heart. Anyhow sending him that thank you note made me feel so good, hope it brightens his day too. I can see power of being kind & nice to others is biggest mood booster. such simple tricks to do in life to be happy person.   Asha                                                

achandra

achandra

 

A week away in Broken Hill

I have just been to Broken Hill for a week with Trevor, it is cool and dry inland so on the sunny afternoons  I sat on his verandah and read and I'm always happy to do that. When he and his girlfriend  were available (they are both busy doing training courses) we went places, some new, some old favourites. On my birthday we went to Silverton, a former mining town now a popular place for artists and went to a couple of galleries. There are some wonderful paintings of that wild desert country beyond the Hill. It is good to have time to just enjoy being in a place where life is so different from home.   It was my birthday and Alice's birthday while I was there, so two celebrations, mine was a nice dinner out, hers a special  afternoon tea. I haven't any unreal expectations these days so it was just good  to be with family for the day. I enjoyed my time with Alice it was nice to see the fun she has with Trevor. He plays a lot more games with her than her mother does so she has a ball while she is with him. His girlfriend has a Chocolate Labrador who is very popular with Alice, she hugs him and drags him around, I am glad she responds so well to him.   The flying was not the problem I was told it could be, it was more my fear that something would go wrong that bothered me. I know the problem of increasing the lymphoedema due to pressure  was on my mind and of course while the stocking plus the new leg wrap was supposed to prevent that happening the stiffness made  me feel less confident in my ability to climb steps, sit for a long period etc. The walk through the airport was easier than I thought it would be as I had allowed plenty of time for that. I never realised how much I took my ability to get around for granted and jhow much easier life was prior to what is really just a minor glitch in my life.   I looked at going on a trip out to one of the local opal fields, about three hours drive away on my next visit.I love opals and it is interesting country, boney and dry but with it's own special beauty. Living on the coastal strip as I do I yearn sometimes for the silence of the bush and Broken Hill gives me that feeling of isolation in the big sky country. There is something special about the sensation of seeing so many stars at night, having a different sunset every night, waking up to bright skies in the morning.   Now home to take up the routine tasks. It has been raining while I have been away so the grass is greener than when I went away, it is also colder as there is an overcast sky. So now to settle down to my winter tasks, knitting, crocheting, reading, catching up on phone calls and correspondence. Today I went to a local market, had some time at the shopping centre and then some time doing preparations for  the Lions BBQ on Monday. It is good to have a variety of things to do. Some things I have had to give up but most of my usual routine still applies.   It is good to be back and catch up with friends again, luckily nothing much happened while I was away. My other family members don't seem worried about me now things are stable healthwise. I know there will be many tests ahead of me for three to five years yet but know also I can only live my life one day at a time. And that is the same for all of us.    

HostSue

HostSue

 

every day

I went to my first post stroke Neurology consult on Tuesday.  Talked about either increasing Baclofen dosage or prescribing something stronger.  Not sure what, specifically that would be.  Also said they would work on the outpaient physical therapy I've been awating word on.  And ordered a compression glove for the left hand issues.   I'm trying to remain optimistic but honestly, most days I don't leave my room all day other than bathroom trips, unless my sis takes me to Walmart for essentials, usually late at night, which is just spectacular with me.  I do use the wacky tobacco to keep me sane and help me sleep, but otherwise I don't smoke tobacco or drink alcohol, or even coffee.  I been working on future saintdom for many years even though I'm not a "believer" type.  If I am allowed to say such things here.  I know some sites frown on folk like myself. Ah well, tv awaits...again.

beingnobody

beingnobody

 

Apprehension to insomnia

Neurology appointment in 6 hours.  Mind racing, just because.  Sleep elusive.   Woe is me.   Not again this song and dance.  Pervasive, stalking me.   Weariness embraces me but drowsiness escapes me. Make it stop.  I want off.   I miss sleep.  Deep,undisturbed sleep.   TICK   TOCK .....

beingnobody

beingnobody

 

Heros journey

I love Oprah's super soul Sunday series & love authors she talks to on her show, it opens up my world & I get so many AHAs & feel great about my own journey. This week she was talking to Eat,Pray & love Author Elizabeth Gilbert, who was sharing her life experiences & strength she got from reading Heros journey by Joseph Campbell. In a nutshell all of us are called to do something out of our comfort zone & when we face our fears & accept the challenges given to us, that's when hero is born. & in that challenge lot of time we all get fear whether we will be able to do it or  not based on our our fears & we either accept challenge or ignore it, but when we accept challenge that's when hero is born, since this journey is never easy, its filled with lot of fear, people not helping & lot of other drama, but when we rise to occasion something beautiful comes out of this experience. Our challenges & sufferings are our biggest teachers, if we , instead of resisting, go with flow & learn lesson it is trying to teach us, something very beautiful & powerful comes out of that suffering.  whole hour while watching show I was going YES SO TRUE.   I remember asking God to show me some sign that I am on right path when I had decided to go on disability,  & my attention was drawn  to logo of college I was attending which was upside down of company I  was leaving behind. & I remember feeling at peace with my decision, & today looking it back I feel it was one of the best decisions of our life.  today I am actually thankful to all my experiences in my life it has taught me some great lessons & I am thankful for all those lessons. Just today while enjoying our Sunday brunch  at home while watching birds on our feeder & feeling so happy & was telling hubby missed all these relaxing morning when we were young, since you are always thinking of what things need to be done instead of enjoying your present "now". My stroke experience taught me to be in present moment.   Asha      

achandra

achandra

 

Brokenhearted

A couple was in snf here and the husband died. They both could not have found the parking lot between them, they were both in chairs,but he walked wandered. I saw her having melt downs,I even tried to help her do bingo once but as they said she did not stay to play. But she hung out in a chair with her pillow, which for sanitary reasons are not allowed in common areas.  So one day I went to play bingo, and she had her head on bingo table with pillow. I sat next to my friend and asked if they were going to move her as usual...but a man stroked her head saying lie down baby and the woman across the way held her hand looking at me like I was a traitor and shouted at me,"Don't you have any relations?" and it took me a sec to see she meant relatives type relations...and I said of course I do........And then they said her husband died....they married happily 100 years.....and I wondered who put them here 6 months ago.....but  anyway the woman woke up and happily ate the candy from all those who suffered on her behalf, she was happy in an ignorant state,probably sedated. I took my winnings home between hiss and boos. So She goes up and down corridor, looking for away outside as always.     And I was upset that woman said that to me,as if I was heartless or clueless. I did not know her husband died, no one explained or announced and I wanted the seat by my friend.  I moved over.    But I got nightmares about all the loss,all the heartache, and just because I will not parade visitors around this smelly old ugly dirty place with junk furniture...well I have had love and people before.    I think.  I got angry at stroke. I should be visiting my relatives in a place like this, no wait, they all died fast, did not linger growing old, but I was sandwiched, cared for mom and kids too, while working.   I was judged for how I lived, criticized for going to school late in life, for marrying young...although those fit didn't they. I raised my kids and they did all they wanted to do for me because they were in early 20s and it would be unthinkable for them to be saddled.   But I am heartbroken every day because my daughter and son fought, then he stopped talking to her, she stopped talking to me. I have not heard for a year how my grandson is.  So on top of loss after loss, I was robbed of being a grandmother. I gag hearing others gush on about grandkids.  Son says I was a great mother, but I ruined my daughters life by the stroke that put her out of our home and lifestyle. She basically ran off with a man who was married,had a sick baby, and moved out of state and out of my life.   And can I relate to heartbreak. Well those at the table talked about when their spouses died after being married for longer than I have been alive on this Earth. But pain is pain .....and maybe those are nice tea party stories with non of the ugliness this life knows like divorces,illnesses, estrangements,and I would not complain if I was in here 40 years from now having lived a charmed life.   I have a good child,but I pin for the missing one, dying a thousand thousand deaths, like my whole life was for my kids and how can one see it was good and the other have grievances jealousy...   I am supposed to be planning weddings, babysitting grandkids like my friends I cannot bear to communicate with. I survived to see my life,career,home,and relationships fall apart,cease, and I take drugs that cannot ease my physical or emotional pain.   and I wonder why I survived when my kids go to the other mothers where it is life because I live in death,and like the others here I scream when is it my turn, but Gods silence says no quite yet......   how much more will I suffer. yes I am ungrateful because one fun day in the normal world is not enough,    And the old woman asked if I had relations as if I could never know pain. And I ask if anyone besides Job,and I dont mean Jobs, has suffered...and I do not know if I have held my cursing in the pain like he did.forgive me Lord.   My pain is inside and out. Supposedly this is why venting can bring each other down. grief is contagios.   But I will sleep this off, and cope to live another day and vice versa.    

SassyBetsy

SassyBetsy

 

finally Dan takes some tylenol

Dan fights all pills has refused all for about the last 2 years. This includes pain pills and the like. But when his brace got put on wrong it stimulated some really bad pain for him. It took 2 weeks of his groaning and I finally said- if he didn't take some tylenol I wasn't coming anymore. Blackmail basically. But darn it helped his pain. So for now he is taking the tylenol. Everything in our lives has to be dramatic. Simple tylenols become big issues. Strokes - can, in Dans case take away common sense. ON the other hand, he still thinks to look when ever he approaches the car for any leaks. Last night he seen one. Ill get it checked soon, so there is that. It always boggles me what he knows, cares about and what he doesn't . And it changes, about the time a caregiver adjusts to his demand , it changes. 

nancyl

nancyl

 

My laugh for the day

I have been using the bus for about 4 years now.  There are a few places I go on a regular basis, I know generally when the bus should pass by.  Yesterday was very warm, okay hot by Michigan standards (90+ degrees F 35 degrees C.  I usually go to the bus stop about 5 minutes before I expect to see the bus.  Yesterday was the same routine.  I was hanging back in the shade.  I was day dreaming about getting home taking a cool shower and just relaxing.   looked up as the bus passed by, at the estimated time I thought it would go by.  Darn it, right on time. Of course, I had a good laugh at my expense.    Given the choice of laughing or getting mad about the situation I put myself in. I chose laughter.  Who could I blame?  Only myself.  My day dream added 45 minutes to my trip home.  The best part of the delay, one of the bus drivers was playing real old Motown.  Early Michael Jackson, The Jackson 5, just to name a few.  I had to go south to go north.  Many do not understand, It is my reality and I don’t have an issue with it.   Remember, Without Laughter, there would be tears or anger, Laughing is much more fun.  ;)    Peace, Jay  

Jayallen

Jayallen

 

Sitting at Hair Salon

Well, I did it!!! I got my new highlights...I am blondie!!! I feel like myself. I feel pretty!  My hair has thinned so I wondered what this would end in... But I am getting so many compliments.     I get short of breath, I walked too far outside on the way to luncheon at a coastal restaurant. I pigged out. So, I came back and slept through dinner. I took selfies by the coast to send friend who sent me money to get my new tank tops. I have a blue striped scarf that has one orange stripe...this is my new signature.    My nurse tonight was saying this is perfect look for me ..and she said It Is,        All About The Hair.        ok maybe a big chunk is.   Sitting in the beauty shop was hard, the lighting, the checkered floor, and I got through it, just to be normal....get hair style I want. The hairdresser at the home...ah no. Today, I feel wonderful.   But it was hard,and people looking just see oh look she can go get her hair...then complain...diminishes ..like a person living with pain does not care about appearance...and I had not done anything.....just weird double edge. folks here ...shoot that supervisor came by at said oh you not in bed...i smiled,said did/ you come to see my hair, joking. I slept 7 hours. now my sleep pattern is messed up. But...good hair😊🎶🎑🎊🌻🕊   Also wearing my bracelet for Memorial Day..myred,white,blue,flag,anchor,boat,    

SassyBetsy

SassyBetsy

 

Red Rover

Red Rover, Red Rover Send A Caregiver On Over…   The game Red Rover was a game I played during my childhood.  Often I, along with the neighborhood kids would get together and play this simple game around the summer holiday time. It did not require equipment.  The only objective was to call one individual to run over and attempt to break the barrier formed by the group of young individuals interlocking their hands.  If that individual did not break the barrier then that single individual joined the group forming the barrier. Each individual that broke the barrier kept having a turn until only one was left and declared the winner.  In our neighborhood we had to sometimes have more than one winner because there were a few boys that always seemed to break the barrier
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As children I suppose we played this game simply for fun. There really wasn’t a concentrated purpose to increase our knowledge of team spirit.  Perhaps it did that without us realizing it.  Likely it wasn’t based solely on improving our individual strength.   Regardless of the actual premise for the game of Red Rover the goal seemed more about just having fun.  While we played this game for hours I never seemed concerned about time.  Those days of my childhood always seemed to be filled with fun.  I thoroughly loved my youthful years. Maybe it was simply because my whole neighborhood would gather during these holiday times like Memorial Day and we would eat, play, and embrace the festiveness of the time.  We just took time to enjoy being with each other.
 
Certainly, when I was a kid I never thought about the purpose of Red Rover.  If my name was called I ran with all my might to break the barrier of the other children.  Although I always tried to break the barrier more likely I didn’t and I would then become part of the barrier. I never felt defeated. I just took on the role that was determined upon my turn.   Three weeks ago, my husband, a 3 year, 2 strokes survivor was admitted to the hospital due to a grand mal seizure that rendered him unresponsive.  He had not experienced this kind of seizure activity before.  Well, he did in December but in a much milder fashion and we quickly went to the hospital.  At that time they seemed to conclude that he had a viral infection of unknown origin. He saw his Neurologist at the same time and he sent him through a course of test and blood work, which in turn started home therapy.  Somehow, my stroke survivor had aphasia begin after his hospital discharge in December.  While he improved with home speech therapy I still had discussion with the Neurologist of the possibility of stroke or TIA that didn’t show on Cat Scans.  We all seemed to agree that it appeared that he did but there was no solid finding. And, as I said earlier, seizure activity decided to jump on board. Thus today he is in a Skilled Care Rehabilitation Hospital to get back his strength, balance his blood pressure and continue his Physical, Occupational, and Speech Therapy while receiving medical attention.   Since it feels much like playing the game of Red Rover I, along with my stroke survivor am running toward the barriers.  The difference this time of playing the game is I, along with my husband, seem to be breaking the barriers.  Sure all that surrounds care giving for a stroke and seizure survivor is still prominent.  I, for a while, am getting a little break from continual care giving since my husband is in a facility.  Yet, I do still have to keep up on them at the facility.  I have learned there is no place like home.  And, no one cares about my stroke survivor as much as I do. This current medical event really adds to my already very aware care giving self of the deficiencies still in the system.  Hopefully this is a barrier I will continue to break. So, as I hear the call of “Red Rover, Red Rover Send A CareGiver On Over” I reflect back to those days of my youth when it seemed to just be about fun.  My hope is that my stroke survivor excels and pushes past his current disabled boundaries breaking all barriers so that he can be declared the winner. And I through all this will be content with the idea that we are just having fun.
 

Strokewife

Strokewife

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