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Blessed2behere

Hello from Newbie Pam aka Blessed2behere

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Hi Everyone. My name is Pam aka Blessed2behere. When bad things happen to me, somehow, someway, miraculous things come along. I call them blessings. Whew, this is harder than I thought. Gosh, I read many of your introductions and I am so glad to have found “StrokeNet. I know I’m blessed to be here...Thank you for admitting me to the group. I’ve been so alone in this

 

My 1-year anniversary is coming up and I feel like I have been in a terrible, weird, hazy, sleep-walking dream. It makes me sad when I realize that in my isolation I have made so many mistakes..or wasted precious time with my wonderful husband, 2 grown sons, their wives and 3 granddaughters! So, here goes...

 

For many years I took care of my mom. She passed away on April 15, 2017. She was 93.  Because I loved her and I was able, I honored her wishes and cared for her, in my home, until the end. My husband and I did everything we could to make it “perfect” for her. Honestly, I don’t remember being sick or tired, at all, when I was on duty with her.  I loved the bonus time we had together.  When she passed, immediately  I worried about everything I may have done wrong..or could have done better..especially during her final hours. I second guessed my communication notes to her doctor...and the calls to the hospice nurses etc. Did I pray with her enough, should I have tried harder to get the priest to the house on Good Friday?  Was she in pain?  Then through the grief came the memorial plans and all of the decisions!

 

Our sweet, beautiful 13-year old golden retriever, Pearl, chose to lead my mom home. She passed less than a week before mom, there just hadn’t been time to properly honor Pearl’s special place in our lives...oh, how I missed her.  During the second week after mom’s passing one of my dearest friends came to town. She kept asking me if I was alright? Why? I’m fine!  Yes, my right arm was stiff or asleep because I slept on it wrong, I was dizzy because I forgot to eat, my headache was just a stupid migraine. Dang my foot is asleep again, that’s why I tripped.... just tired blah, blah blah! Three weeks after mom passed, I had a stroke.  Later, my friend would say she knew something was very wrong.

 

Up until that day I had avoided my mom’s room. That morning, for some reason I opened the door and wandered in. I told myself it was time to start the “clean-up.”  Through my tears, eventually I picked up the little camera (Snug Nanny Cam) from her bedside and moved it to my room. I plugged it in, thinking I would ask one of the kids if they wanted it. Then as per my routine, I did a few chores, made a few calls and then I noticed the birds singing and the sun shinning outside. For the first time in days, I remembered it was time to change the hummingbirds feeders. My chalky white legs needed a little sun. I slipped on some shorts, tripped and fell, again, this time in my closet and cut my leg. Then I headed outside to work in the yard.  I vaguely remember feeling a little dizzy. I had the same darn headache, maybe a little worse, it  just wouldn’t go away, the sun was bright and I stumbled going down the steps, my foot was asleep..or maybe my whole leg?  At some point  I headed back into the house to take a migraine pill and darn my foot was still asleep. The usual meds hadn’t worked all week..but it was habit by now. Apparently, I picked up the phone to call my husband and sat down on the edge of the bed.  I was home alone.  
 

My husband called the house to tell me he was headed into a 3-hour meeting (apparently, like my friend,  he had noticed I was “off”  and had been worried too).  After repeated attempts to reach me by cell phone and landline...and for some “divinely” inspired reason, he checked the application on his cellphone that accessed that little camera from my mom’s room.  He had no idea that I had moved it.  Immediately he saw me slumped over..the camera has a microphone and speaker..after calling out to me and getting no response he went into emergency response mode and tried to reach neighbors and friends as he made his way home. He wasn’t able to reach the neighbors, and it took 15 minutes for him to get to the house from his office. 

 

My poor husband found me sitting on the edge of the bed, slumped to the left, unable to speak...or right myself. I had tried to call him from the landline but dropped the phone. I knew he was there, but he didn’t understand me. I knew he was scared, I could hear it in his voice.  But I couldn’t actually see him. I became aware that my room was full of paramedics, police and firemen.  They found the cracked phone under my feet. I was confused, I could hear them but they didn’t seem to understand me. The nice man asked me to smile! Hold up your arms! Did you fall how did you cut your leg? I didn’t seem to have any strength when he asked me to squeeze his hand or lift my legs. I was so tired. Here in San Diego they have a stroke protocol that kicked in as they were doing the field assessment. I was whisked away in mere minutes. The stroke response team beepers went off!

 

I vaguely remember, arriving at Mercy Hospital. But, I do know our local hospital very well and noticed that I did not go into the ER, no waiting for an assessment.. I went straight to an MRI with “stroke team” running along side my bed. Someone was interviewing my husband. When was the last time anyone had seen me? What time, exactly? Flash cards? Questions... I was scared, honestly, in the ambulance I thought I might have had a heart attack.  Was I having a heart attack? Did they say stroke? Why could no one understand me? Some one asked where I lived...I said “hoooo-mum” Why did I sound like ET? I wanted to tell the young paramedic that I was a hard stick..my words didn’t  make sense..I was so tired... He couldn’t  find a vein...I have rollers but he couldn’t understand me.

 

The MRI located a  blockage or narrowing. The questions of how long since the event became the only focus of the conversation my husband was having with the doctor. In my room the flash cards and push-pull, look at the light continued, eventually I broke down and cried. What was the use? They couldn’t understand me. My right hand nurse, the face that met me at the ambulance the one running with me to the MRI, the only one who could start my IV after so any others failed...her face...I recognized.  I could focus on her. I looked into her eyes and whispered “I know you” she said “yes, I’ve been with you the whole time.”  The room was full of people, so much going on. Where was my husband? I could barely hear his voice.. I looked at my nurse and made sounds indicating I needed my husband. Finally, it seemed like they understood that I was overwhelmed and needed one voice and some answers. I could hear one voice not all of them at once.  Yes, each one of them had a job, that’s why they were there.

 

By now most of the set-up was done. I’m a very hard stick and it took forever to get all the lines they needed accessed. Norm, my husband had been just out of the room talking in hushed tones with the doctor. Decisions were being made about my eligibility for the tPA clot buster injection. My husband left the house at 7:30 am. It was the last time anyone had “seen” me. It was now after 11:00 am. I could hear the despair in his voice. Again I look at “my” nurse. Words didn’t seem to work so I kicked my foot a little and looked at my husband and the doctor. She understood and moved them closer to me. The doctor finally spoke loud enough for me to fully hear, “So if you left the house at 7:30 and no one else has seen her..can we call the neighbors?”  “Is it possible she used the telephone” he asked?  “We are running out of time”!  Right then, I understood, they were trying to figure out when I went down. I started kicking again and making sounds....and pointing at my husband with my eyes.  Finally, he came close to my head. When he bent down to hear me I used all my might to push out the word “RAYDEEOOO”..  “Radio, are you saying radio?”  Yes, I nodded.  “Are you sure”, he almost shouted? Yes!  “You turned on your show at 9:00?”  Yes!!!  He knows me so well, I’m a creature of habit, not prone to luxuries, just small everyday things. For years and years, I have turned my radio on at 9:00 am and he knew that one tiny detail about me, bless him.  Probably the only person who would have known that... Practically jumping for joy he shouted.. “She turned the radio on at 9:00!”  The doctor repeated what he said, as if for confirmation, and the world started spinning again. She qualifies!  He barked some orders..the room filled up again, the crash cart was ready, different teams standing by... (later I would learn that the doctor explained to my husband the pros and cons of tPA, hence the crash cart team)

 

The doctor was now at my left-side slowly pushing the “miracle” into my veins.   I felt like I was on a stage..Everyone was focused on  me. Again, the flash card, “Lady at the sink” did I say it right? “Washing dishes?”  The push pull guy was at it again, squeeze my hand, follow the light, push, push raise both arms..  Like a “miracle moment” staged by Hollywood,  I could  “feel”  the fog clearing from my body and brain. I could literally feel the relief in the room. Everyone had been so tense and ready to do battle with whatever came next. But, as I began to speak those first words I could see anticipation on their faces turn to joy. Yes, it was working! Yes, I was coming back. I’m not sure they cheered, but I did..maybe not out loud. I knew something good was happening and I felt blessed.

 

It is all still hazy. I knew I was in good hands. I stayed in the ICU for a few days. Nurses from the floor would come by to visit. Each one, in their own sweet way,  would say how nice it was for them to see someone do so well. In their line of work good outcomes are hard to come by. Word had spread that I was doing so well. So many people gave me little nuggets of wisdom here and there. Don’t let anyone say you can’t do something.  I had/have trouble with my words...I know what I want to say, but can’t grab the words to speak it. Another person told me not to let anyone put words in my mouth...especially it they didn’t match what I meant!  

 

The follow-up MRI was clear and showed no signs of damage. Everything was worked up...and I passed most. Swallow study...not perfect. I couldn’t wait to get home and leave bedpans behind forever (pun intended;-)  I was very lucky and I know it. A devoted husband, a little camera and a radio show saved my brain from extensive damage. I joked that I was finally able to confirm that I had a brain.   

 

So, that’s the account of my stroke as I remember it. It’s all a little hazy and it’s pretty antidotal, not terribly technical I know. Ironically, I had a “know the signs of a stroke” sticker taped near my bed. I was worried about my husband being high risk. I’m told that I’m stoic and have a high tolerance for pain. I do  admit that I was aware something wasn’t quite right, but my headache wasn’t that bad, I’ve had much worse. The tingling in my foot and arm... I should have paid attention to. That morning they were dead..like deep asleep. Honestly, I thought I was experiencing grief and exhaustion.  Pieces of that morning are missing..and randomly little details appear.  For example, I occasionally order presents for family members online.  Recently, while shopping  online, I suddenly remembered THAT morning?  Just before I went outside and after turning on the radio, I placed an order with one of my favorite online stores for children. At the end of my order, I noticed the item was going to be delivered to my home and not to my granddaughter who lives out of state. They had a hotline number for me to call. I sat on hold and listened to the radio while I waited for help. I remembered  that I turned the radio down to speak to them...  I was unable to straighten out my mistake as I tried to explain what had happened... Now I wonder what that conversation sounded like on the other end? I remember that I tried to tell my nurse I had used the phone when they tried to fill in the timeline. When I ask my husband what my speech was like he makes garbled sounds.  I always say, I’m sure it wasn’t that bad! He says it was.

 

Ironically, on the anniversary of my mom’s death I found StrokeNet.  In a few days it will be the 1-year anniversary of my stroke. Everday I hear things like “you look normal”  or “you would never know”.  My friends mean no harm, I  hope. But, inside I feel anything but normal. It’s my new normal and that’s okay.   I don’t know how to explain it and I want to be clear that I absolutely know I’m how fortunate I am. I know that many of you have much greater struggles. I’m still weaker on my left side. I often trip and fall..no harm no foul..I’ve got good bones. I drop things, and need help with simple things in the kitchen or with crafts. Swallowing is a problem..I’ve had some incidents that were scary. I’m very careful.

 

I feel  isolated. At first I was afraid to go out without my husband. What if I use the wrong words, or got stuck? (It happens all the time)  I often make a list of plans, Things To Do Today. The day comes to an end and I didn’t go out.  I can’t account for my time, it’s like I’m in a haze.. The haze I can handle it’s the anxiety when I make stupid mistakes. Touched the scorching hot pan, after I moved it from the flame. Little things everyday. What is the word? Why can’t I organize my thoughts like I used to? 

I hope this isn’t too long. I’m grateful that each of you has shared your story. I don’t feel as alone. I know that I put my grief on hold and still need some help. I keep saying I will make an appointment with the new priest (haven’t done it yet). My husband and I have embarked on a complete change of diet and exercise. We share the same doctor who encourages complimentary medicine. I’m trying to stay off meds...using supplements. I see there is another place to discuss all of that. I’m not home when you have your chats but will try to work it in the future so I can be. Bless you all. Thanks for being there. I was 66 when I had the stroke. 

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Nice to meet you Pam, that's a remarkably clear description of your stroke, congratulations. I'm so glad you got the tPA and that it worked for you. Your remaining deficits can be worked on and will improve over time, just remember that this thing is a marathon and you're are only just starting out.  Don't be too hard on yourself with those "stupid mistakes", just try not to learn from them, although if you are still in the haze that will be very difficult.

 

I do not remember being hazy after my stroke, but it's likely I was. I recently had an episode of reduced oxygen flow to the brain (in hospital for a non stroke problem)  The haze that generated was very odd, I knew something was not right but I could not describe it and I was not really aware of how out of it I was until after it resolved and then I was horrified at the crazy things I'd done.  I do hope your haze lifts soon.  Listen to your body and rest when you need to. Stroke Fatigue is a real thing.

Hugs

-Heather

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Hi Pam

 

Welcome to one of the most exclusive clubs around.  Feel free let your hair down and let it al out here.  We know what it's like and have all been there in one way or another (or are still there).  As Heather said, you'll see continual improvement over time.  I'm a touch over two years post, and have just see a huge leap in self-confidence, and my ability to engage with people instead of (not always just figuratively figuratively) hiding in a corner.

 

I'm sure that your friends are trying to be encouraging. I got a fair amount of that early on (and still do), and found it very disheartening, as though they were negating the trauma, until I finally managed to understand that they *did* see the deficits and were not denying their existence, but were trying to cheer me up and encourage the healing somehow.  Also quite a lot of wishful thinking on their part -- it's painful when you see someone you love reduced in this way.  Try to take what they say as signs that they love you, and want the best for you.


Your brain (and body, and psyche) has had a huge trauma, and it takes time to heal.  Hang in there, rest, and be gentle with yourself.

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Hi Pam and welcome. I can completely understand the fog you talk about. When I first came home my awake life was made up of 5 minute increments. I eventually told my neurologist that I felt as though my body and mind were moving through jello. The haze, disorientation, lack of memory, really out of sorts thought process, lead eye lids, anxiety, inability to say what I thought, and so many more. I am so happy you were able to receive the tPa. What a blessing. What a vivid memory of your stroke...an amazing story! Please know you are not alone here and I hope you really make yourself at home. Keep on working to improve even when others can't see how your experience affects you. I really believe that improvement after a while is affected by a person's attitude and strive. Your story has brought a smile to my face. Hugs.

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3 hours ago, heathber said:

I'm so glad you got the tPA and that it worked for you. Your remaining deficits can be worked on and will improve over time, just remember that this thing is a marathon and you're are only just starting out.  Don't be too hard on yourself with those "stupid mistakes",

Thank you heathber. I will try to remember that this thing is a marathon...one thing I forgot to say earlier is that I’m so tired. I think, when I describe my haze..part of it is that for so long it was hard for me to stay awake.  Looking back..perhaps some depression, my brain trying to re calibrate to all the changes add a little/alot of grief. Frustration and fear also had guest roles in my recovery... So my marathon began with baby steps... Already, in the few days since I found all of you..I have learned so much. I haven’t talked to anyone about any of this. Thank you for the encouragement. It means more than I can say.

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4 hours ago, heathber said:

Stroke Fatigue is a real thing.

I did not know that Stroke Fatigue is a real thing. Whew...thank you, thank you this important piece of my puzzle.

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It is such a large piece of most peoples post stroke puzzle but the medical experts all seem to forget to tell us to expect it.  I also recommend you familiarise yourself with "spoon theory"  You no longer have an infinite supply of "spoons" . https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

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3 hours ago, PaulNash said:

Hi Pam

 

Welcome to one of the most exclusive clubs around.  Feel free let your hair down and let it al out here.  We know what it's like and have all been there in one way or another (or are still there).  As Heather said, you'll see continual improvement over time.  I'm a touch over two years post, and have just see a huge leap in self-confidence, and my ability to engage with people instead of (not always just figuratively figuratively) hiding in a corner.

 

I'm sure that your friends are trying to be encouraging. I got a fair amount of that early on (and still do), and found it very disheartening, as though they were negating the trauma, until I finally managed to understand that they *did* see the deficits and were not denying their existence, but were trying to cheer me up and encourage the healing somehow.  Also quite a lot of wishful thinking on their part -- it's painful when you see someone you love reduced in this way.  Try to take what they say as signs that they love you, and want the best for you.


Your brain (and body, and psyche) has had a huge trauma, and it takes time to heal.  Hang in there, rest, and be gentle with yourself.

Thank you, Paul. Nice to meet you and the others from such an exclusive club. It is such a relief to know I’m not alone. I was begining to fall into despair. To know that the process is similar and that I’m not imagining some of it helps. I’m happy to know that you are improving with regards to self-confidence...I’m definitely guilty of hiding (not always figuratively) in the corner.  

Also, thank you for the kind words regarding comments friends make.  I will try to take what they say as signs they love me.  Thank you for being there...

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1 hour ago, tmciriani said:

Hi Pam and welcome. I can completely understand the fog you talk about. When I first came home my awake life was made up of 5 minute increments. I eventually told my neurologist that I felt as though my body and mind were moving through jello. The haze, disorientation, lack of memory, really out of sorts thought process, lead eye lids, anxiety, inability to say what I thought, and so many more. I am so happy you were able to receive the tPa. What a blessing. What a vivid memory of your stroke...an amazing story! Please know you are not alone here and I hope you really make yourself at home. Keep on working to improve even when others can't see how your experience affects you. I really believe that improvement after a while is affected by a person's attitude and strive. Your story has brought a smile to my face. Hugs.

Thank you Tracy.  You describe my fog perfectly. “Moving through jello” is spot on! “The haze, disorientation, lack of memory, really out of sorts thought process, lead eye lids, anxiety, inability to say what I thought.”  I couln’t have said it better. Thank you for the warm welcome...I’m trying, really trying to pick up the pace. The anniversary. Has gotten my attention..and I want to be better. Thank you!

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Pam, Thank-you for your very clear stroke story. I was conscious during my stroke, too, but there our simIlarity ends, as I lost consciousness shortly after the EMT's arrived. I remember nothing of the next 2 1/2 mos. of my life. But I remember trying to tell my husband that I needed to go to a hospital, and feeling so frustrated and confused because he didn't understand what I said. It was only later that I understood that my "words" didn't sound like words at all. Frightening, isn't it?

I'm so sorry that you lost your dog, your mom, and had a stroke all in a short period of time. That's a lot to deal with at once. You may have discovered in the year that it takes you longer to complete tasks. That's OK, and normal. You may need to take things slower for awhile yet. A year into recovery isn't very long at all, a far as your brain is concerned.

I'm so glad you found us. Welcome to Strokenet! Best, Becky

    










 

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I very much agree with Becky. Don't be too harsh on yourself coming up to the 1 year mark. I think all of us agree that improvement still happens much beyond that. Wanting to feel better is a great objective to focus on. Don't be too hard on yourself and even if improvement gets slower keep that wonderful objective. You go forward at your own pace...what feels good.

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13 hours ago, heathber said:

Nice to meet you Pam, that's a remarkably clear description of your stroke, congratulations. I'm so glad you got the tPA and that it worked for you. Your remaining deficits can be worked on and will improve over time, just remember that this thing is a marathon and you're are only just starting out.  Don't be too hard on yourself with those "stupid mistakes", just try not to learn from them, although if you are still in the haze that will be very difficult.

 

I do not remember being hazy after my stroke, but it's likely I was. I recently had an episode of reduced oxygen flow to the brain (in hospital for a non stroke problem)  The haze that generated was very odd, I knew something was not right but I could not describe it and I was not really aware of how out of it I was until after it resolved and then I was horrified at the crazy things I'd done.  I do hope your haze lifts soon.  Listen to your body and rest when you need to. Stroke Fatigue is a real thing.

Hugs

-Heather

 

13 hours ago, heathber said:

I recently had an episode of reduced oxygen flow to the brain (in hospital for a non stroke problem)  The haze that generated was very odd, I knew something was not right but I could not describe it and I was not really aware of how out of it I was until after it resolved and then I was horrified at the crazy things I'd done.  I do hope your haze lifts soon.  Listen to your body and rest when you need to. Stroke Fatigue is a real thing.

I’m re-reading this morning Heather.  Your reduced oxygen to the brain episode must have been scary. I can understand when you say you were horrified at the crazy things you had done. I met a new doctor about a month ago. I struggled to explain to him my haze and exhaustion and behavior. Bless him because he listened to me and didn’t dismiss me outright. On his recommendation I began Hyperbric Oxygen Treatments...I know there is another blog place to discuss treatments... I mention it because I’m not sure I would have had the ability to follow through joining this network if I hadn’t started the treatment. I was in such a hazy place..and going down hill. For me, oxygen has been another important piece of my brain puzzle.Exhaustion is still an issue..but you give me a reason to be optimistic. Thank you. 

Pam

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16 hours ago, becky1 said:

I'm so sorry that you lost your dog, your mom, and had a stroke all in a short period of time. That's a lot to deal with at once. You may have discovered in the year that it takes you longer to complete tasks. That's OK, and normal. You may need to take things slower for awhile yet. A year into recovery isn't very long at all, a far as your brain is concerned.

I'm so glad you found us. Welcome to Strokenet! Best, Becky

Thank you Becky for the condolences. I miss my doggy, Pearl, so much. She was our “empty-nest” puppy.  My boys would see us pamper her and roll their eyes.  My youngest once said “you never spoiled us like that.” I told him that he never behaved as well as she did! ;-)) She was a beautiful soul..and my buddy. 

 

I forgot to mention that 2 months after my mom passed my mother-in law did too.  We got through it all, somehow.  Honestly, with the stroke and grief and estate settlements, black sheep family members and more...that hazy, blur, sleep-walking thing took over. I think I surrendered to it on some days as a form of self-preservation?

 

The year went by so fast. My writing, or recounting of my stroke, even when I re-read it, makes it appear that I have clear recall. Actually, it took me forever to write it, it was a bit like journaling.. and the first time I re-told it to anyone. Because I have some trouble placing my words where I want them, I think I took particular care.  But,  it felt more like I was looking at a go pro video shot from a helmet I might have been wearing. Or that I was looking into a snow globe of it happening to me. I do remember events at the house..waking up confused with all the EMTS..my confusion in the ambulance, the blur of the stroke response..most everything after that is blurred. Even though I was given the tPa.  That overwhelming exhaustion! It really, really helps me to hear that a year into the recovery isn’t very long at all, as far as my brain is concerned. I admit to feeling guilty that I wasn’t getting very far. After finding all of you I’m beginning to understand that this way bigger than little ole me. With regards to progress I see that this is not a race to the finish..just getting up each day and moving forward is a good thing! I see that I need to set more realistic goals..and not be so hard on my self... My husband is planning to retire at the end of the year. We talk about moving out of state to be near one of our kids and the youngest grand baby.  I somehow manage to add stressful worries and what if’s to my planning something wonderful.  I need to break things down. Previously, I was accomplished and fearless.. I have another son Living in Bali... I’m a frequent flyer..but have not wanted to make that 24 hour trip. I have always flown there alone...working up to that. Actually..working up to leaving the house..baby steps.

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All I can say is wow...talk about life stress. It is a fact that stress is a huge factor in stroke. I am so glad you guys managed to make it through and healing began. That stroke haze seemed to last a long time for me as well. You've done a wonderful job of recall and word placement! 😊 I like hearing you speak of positive things you are feeling in response to posts...I am sure we all feel good helping when we can. Baby steps...that's what you have to do sometimes and I know I have started just that way many times and positive results followed. I totally relate to "working up to leaving the house". I remember being there...for a pretty long while...but today I do so much more now out of the house. I visit my family and my daughter, go on a short grocery shop each week, the rare but occasional out to eat, and in the past 4 months have joined a local stroke group (I call it socializing). Little by little I have found my courage and readiness to venture beyond my house and I am so sure you will too. Hugs.

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Hi Pam, I am Pam too.

I chose Sassy Betsy because I love Betsy Johnson purses and accessories,except for skulls stuff, yuckk. I had a bunch to choose from, and loved the roses stuff.

I survived a stroke too, can walk,have pain, and now may is 4 yr rebirthday.

 

You are still here, blessed to be loved, and on the road to enjoy the meaning of life together,and it will be slow,but full of love and hope. This is a good place to come for support and more love. Welcome. I am glad you explained what it was like.  You will learn to take your time and enjoy the life you still have. Please come here and share your experiences.

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hi Pam :

 

welcome to best online stroke support group, I remember how lost I  felt for 9 months even after having very supportive spouse & family. now that you found us you will never feel alone again. stroke recovery is indeed marathon & not a sprint. I stroked at age 34 which left me paralyzed on my left side & retired me from the job I loved. I never thought I would find joy in living again. but having young son at home & this site helped me pick up pieces of my life & make beautiful mosaic again. life after stroke is just different not good or bad just different. I found chatting with other survivors & blogging on this site very therapeutic for my soul. today after 14+ years on this post stroke journey, I feel stroke as just speed bump which allowed me to slow down & enjoy scenery along the way.

 

Asha

 

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Hi  Blessed2behere  That was an incredible description of your stroke and the time leading up to it. We have similarities as to being totally aware of everything but completely unable to communicate. Fortunately the people surrounding us in hospital had previous experience of our problem and were able to fill in the gaps, but there is nothing so good as being able to discuss problems with others who have actually suffered them. Only on a forum like this can it be achieved.

Welcome.

Deigh 

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Pam, I forgot to tell you in my last post that swallowing problems, called  "dysphagia", are fairly common after having a stroke. I have it, and so does several others here. It does improve with time, even though I'm not sure if it ever goes away completely, or you just get better at managing it. For now, make a mental note of those foods which seem to be difficult to deal with, and either avoid them altogether, or be especially careful when eating them. Eat slowly,take smaller bites, and make sure that each bite has been swallowed completely before you take another.  

Secondly, you seem to be doing very well I know that some things are still very hard for you, but you're staying with it, and trying so hard to deal with difficulties. That's what it takes!   Becky

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5 hours ago, SassyBetsy said:

Hi Pam, I am Pam too.

I chose Sassy Betsy because I love Betsy Johnson purses and accessories,except for skulls stuff, yuckk. I had a bunch to choose from, and loved the roses stuff.

I survived a stroke too, can walk,have pain, and now may is 4 yr rebirthday.

 

You are still here, blessed to be loved, and on the road to enjoy the meaning of life together,and it will be slow,but full of love and hope. This is a good place to come for support and more love. Welcome. I am glad you explained what it was like.  You will learn to take your time and enjoy the life you still have. Please come here and share your experiences.

Hi Pam, Thank you for the welcome. I am truly blessed to be here..and loved. I’m starting to understand the power of a group. I was so alone. I’m not sure that I mentioned how hard it has been for me that some friends no longer include me. I fancy my self “independent” but that’s just a sad acceptance of being left out. I'm working on getting out more and getting involved in taking care of myself by trying to do the things I love..this is the beginning for me. Thank you. L love roses too! 🌹 

Pam

I’m just learning how to get around here in the Strokenet world..

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2 hours ago, becky1 said:

Pam, I forgot to tell you in my last post that swallowing problems, called  "dysphagia", are fairly common after having a stroke. I have it, and so does several others here. It does improve with time, even though I'm not sure if it ever goes away completely, or you just get better at managing it. For now, make a mental note of those foods which seem to be difficult to deal with, and either avoid them altogether, or be especially careful when eating them. Eat slowly,take smaller bites, and make sure that each bite has been swallowed completely before you take another.  

Secondly, you seem to be doing very well I know that some things are still very hard for you, but you're staying with it, and trying so hard to deal with difficulties. That's what it takes!   Becky

Becky..Thank you for the information about “dysphagia.” I have had at least 4 really scary moments...3 while home alone.  I get these crazy, HUGE and loud hiccups. The first one is now my clue that something is wrong!  The hiccups come fast and hard and take my breath away.  Then, if I can catch my breath... I learned to throw myself over the back of a chair or even bend down over the sink. The choking sensation is very scary. I really work on not eating (or gobbling) leftovers while cleaning up. Or the “I think I’ll have just one cookie, cracker or chip!” I have cut them out completely..  But, 2 weeks ago we were at a lovely, black-tie fund raising dinner. We were seated at a table with young couples we had only just met. I passed on the bread when it came around..but on the second pass I placed the yummy roll on my plate.  Since we gave up most breads a few months ago..I just wanted a teeny little taste.... immediately the first hiccup. I put down my napkin, excused myself and dashed out of the huge ballroom. In a panic I ended up in a long, long hallway with the bathroom way far away.  I made a beeline to the open balcony area where cocktails had been served earlier.  I spotted a trash can..looked right and left to see if anyone was around..I was panicked and mortified.  I made it to the trash bin.  Fortunately, eventually I became aware that a table of volunteers was seated in that long hallway. They were the cashiers that collect donations from the silent auction. I spotted someone my age, with a kind face. I staggered to her and said something like “I wonder if you can help me, I’m having a medical emergency and need help finding the restroom. Could you find my husband he’s seated at table # 30.”  I have now learned to ask for help from strangers. Otherwise, I may have appeared drunk as I was unsteady there for a moment. I have also learned that more often than not..people are wonderful. They were very kind. Eventually I confided that I was recovering from a stroke and suffering a couple of symptoms. They asked if I need the hotel medical staff or 911. No..just the bathroom and my hubby. We are 5 minutes from the hospital..we can get there if I need that...eventually all was well..no more food or drink that night. I didn’t know it was common. It is scary.  For some reason chicken is also a trigger? Part of the new normal is self awareness and situational awareness.  I used to be accused of being a busy  bee🐝 ! Always on the move, getting so much done.  I think I can still get it done..just differently and slower. Today, was not a great day for me..I’ve had that food suck in my throat feeling.. all day. So no eating till it passes, hubby got home and I explained no dinner for me..bit uncomfortable..wishing for root beer float...another  day. 

 

Thank you so very much for all he information..I really am a newbie! I’m so grateful.

Pam

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Pam Dysphagia is a common factor for many of us just like Becky said. It ranges in severity and I am familiar with the crazy body jolting hiccups. Liquids are something that can cause a huge choking spell for me too. I still consider myself on the slight end of dyspagia. I feel for you when you go through these bouts...I bet it is scary. I think Becky gave you excellent advice about keeping a journal on what foods affect you the most. Speech therapy also can work with you on this issue and give you a ton of information even exercises. Like everything else it takes time. Good luck.

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>> I miss my doggy, Pearl, so much. She was our “empty-nest” puppy. 

 

We have a Shitsu-cross called "Pearl", adopted form the local humane society (my wife is a vet there).  She was (and still is) a huge boost when I start to feel down, unconditional love 24/7.  I don't know how long it has been, but if it is not too soon, consider looking for another dog to love and be loved by.  They really do help with mood and with recovery for serious trauma or illness.

 

Other than that be kind and forgiving to yourself.  Just surviving this far is an amazing feat, much more difficult than running a marathon (I know, I ran lots of them before my stroke).  Remember, you've got lots of time to recover, so don't worry if it is slow.

 

       paul

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Pam, What a scary incident! I had swallowing problems from day- one. Had a feeding tube in for several weeks. Then had to re-learn how to eat. I don't get hiccups, but I do start coughing.My Speech Therapist, who taught me how to eat, added bread to the list of foods that I could eat towards the end of my feeding program as it causes problems for a lot of people. Seems that bread absorbs liquids quite easily. Then, it swells. But, guess what- there's no liquid left to help it move down your throat, so it gets stuck.  What helped me learn how to eat bread, was to take very small bites of it, chew well, then swallow, then take a small sip of liquid right after swallow to help it on its' way before it could create a problem. Speech Therapists are who is trained to help with swallow issues-have your doc refer you to one who has experience dealing with swallow issues to address your particular problems in this area.   Becky 

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7 hours ago, PaulNash said:

>> I miss my doggy, Pearl, so much. She was our “empty-nest” puppy. 

 

We have a Shitsu-cross called "Pearl", adopted form the local humane society (my wife is a vet there).  She was (and still is) a huge boost when I start to feel down, unconditional love 24/7.  I don't know how long it has been, but if it is not too soon, consider looking for another dog to love and be loved by.  They really do help with mood and with recovery for serious trauma or illness.

 

Other than that be kind and forgiving to yourself.  Just surviving this far is an amazing feat, much more difficult than running a marathon (I know, I ran lots of them before my stroke).  Remember, you've got lots of time to recover, so don't worry if it is slow.

 

       paul

Thank you, Paul, for telling me about your sweet Pearl. Give her an extra snuggle.. I miss our Pearlie Girl so much.   It’s been a year and I am so ready to welcome a pup into our home. I do know the therapeutic value of animals and I’ve become the crazy lady who crosses the street to greet the doggy going the other way! But, we have some big life changes coming with my husband retiring and we plan on a long vacation with our kids this summer. I would Iike to get a pup right after all that! I spend a lot of time looking at doggy videos and pictures online:-)) I feed birds and the other critters that parade through my yard...and my husband got me a fancy camera to take photos of all the visitors, which takes me outside of my troubles.

 

Thank you for the recovery encouragement. It means more than I can say. I’m so happy that I met you all and am just beginning to understand... that surviving this far is something. Maybe I was feeling a little guilty all crazy mixed up with grief? All of this does mess with your psyche... I just wasn’t able to connect the dots. .. through the brain fog. I’m much more hopeful today than I was a week ago. Baby steps... thank you again.

pam

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Hi again Pam yes baby steps is the way to eat this elephant.  I do hope that you get another dog. There's nothing like looking after an animal to keep you working on your own recovery, and keeping you moving.  You got hit by the double/triple whammy with grief from multiple directions and a life changing medical event all happening on top of each other, and now you'll have the upheaval of your husband retiring as well.  So it's going to take time to process it all. Remember you don't have to do it all by yourself there are therapists who can help with the emotional side of all this as well as the physical stuff. Asking for help is not failure, but do things as you are ready for them there's is no correct way to approach your recovery. it's yours don't be afraid to own it.

 

Hugs

-Heather

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