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.
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.
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.
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.
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.
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 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.
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.
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. ;)
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.
Also wearing my bracelet for Memorial Day..myred,white,blue,flag,anchor,boat,
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
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.
I am ill.
I will get the antibiotics tomorrow.
I saw my own doc at urgent care, I was not taken seriously by this home, not ill according to them....but news flash...my pain meds fight fever just like acetaminophen. And my sinuses are clogged, sometimes nose is clear
Hot cocoa,hot tea, apple juice. Hot helps, and sleep.
Will I feel good for memorial day? Please.
Today I went for a shoe fitting, and I needed the insole adjustments made too because they were not done properly. I walked in telling the guy that I felt like I walking on a pebble in my shoe but it was only the insert and maybe I was like the princess and the pea. So he took out in insole and he found a tiny thing in the seam. I said Seriously?? And he said well you called it! Oh we laughed, but then he took the insert back to make it thinner so my shoe will be more comfortable. I love my shoes now and they fit with plenty of room now that the insert has been made thinner. And the best part is that I get the shoes and inserts free. And I found out that if you are VA then you get two per year. wowee. But I am happy with my new shoes now and no one will be saying these are not the right size to me or else this princess is going to thow a pea.
And then when I got back, there was my admirer waiting for me by my room. He was He is blind and so the housekeepers take him to my room. There he was asking the activities woman if he could have two mini candybars, one for himself and one for me. And suprisingly she gave them to him, and I hesitated before I chose on from his open hand. It was time for me to get ready to eat lunch. Well Iam ready for a nap and a movie.
I am going to hold onto my nice day.
Recently I had to speak up about how my diabetes is treated, I told the nurse I had dr. permission to administer my insulin and I knew how to take care of myself and then she said AND YET YOU ARE HERE IN A NURSING HOME....and I suggested since she is new does not know me can she go get the supervisor who could advise her, she insisted we do it her way which was with holding insulin and that was wrong. And in the end The next day, my endocrinologist called them with specific instuctions which I had been self advocating all along. No one said that nurse got it wrong....
I cried because I have reasons for being here, and that sounds benign but it was insulting.
And all my doctors, therapists say self advocate, educate about stroke,about pain syndrome, about what I need,who I am.
So today that lovely woman brought me communion. I cherish her. I talked about my appt yesterday with pain clinic. I shared about my possible upcoming electrode surgery. She helped by saying she knew knew 3 that worked well,1 that did not. But I shared my story about stroke and getting pain, and how I came to be here, my disability denied then established, my inability to live alone. Well she asked me what to pray for and I told it all. I noticed she looked at her watch. I apologized for burdening her with all that including talking about my lost career being early retirement, but I missed my work dearly. She said if we help 1 person we are successful. I wonder if anyone listens.
A new worker here replied this is a nursing job,pays the bills. I doubt either one of those statements about being a CNA is entirely true. And I am more horrified at her statement to a patient. I worked in schools, I would never told that well it was a job.......well perhaps for that unfortunate soul, maybe this is first job she gets or keeps...but we here in a nursing home are not afforded any dignity.
I feel sorry for the employees here because I had successful job and life and I knew how to behave professionally, even when I had challenges, but I am regarded now as a vegetable, but even though, I have broken body and mind, my soul my soul is here requiring nuturing and dignity.
So that visitor brought me a reading along with communion. It said to be humble...lots of stuff about humility and blessings. I feel bad for my pride, yet rebellious because hey I earned that...but in the end are we not all damaged, are we not all the same in that we got where we got with help, and that we pray for those who do not understand. I realize I am one who does not understand maybe.
I just feel violated, treated disrespectfully, but I must trust them because of the surgery I need. All this self advocating is exhausting. Thinking is exhausting too.
I have unseen disabilities that is difficult to deal with. I have pain which is crazy to talk about.
But can my future change with an electrode?
as most of you know I am blessed with amazing family, who has great dad who provides his unconditional love to all of us & we also have very bright son who on most days is nicest, wise young man who does right things, but I find it sometime we have to push him hard or ask ton of questions before he will do things which is utmost important at this point in his life, so it just escapes me what is he really scared of, why is he not doing what is required of him to do, to be successful in life. I get so annoyed when after telling him something to do million time & he will say yes & when time comes he will not keep his words, such a childish behavior escapes me. I blame me since its not hubby's quality, that lazy quality is of mine lol. but I have learnt my lessons through some of those mistakes of mine, & I don't want him to go through hardship because of it, why not learn from mommy's mistakes than learning from his own. Anyway I had to vent. I just pray he never pay costly price for his laziness. I tell him he is lucky we are his parents so we won't give up on him & keep on trying our best but be worried when other people start giving up on you, and you loose best opportunities in life.
Boy, I have read back through some of my replies lately and wow I have had a lot to say. I am going to call it passionate response. I am so happy that I have an outlet with Strokenet and now another with my local stroke group. I have a lot to say and have a lot of thoughts that I can be really passionate about. I sometimes want to do more...educate others...help improve medical therapies...bring light to subjects about stroke that seem to be put on the back burner. I know I am extra passionate about the type of stroke I had. Also that I am 45 (42 when I stroked) and looked over because of my age which played a part in not being diagnosed until 2 months later. Statistics say that in a research group of 2000 consecutive cerebellar stroke patients (1987) had a mortality rate (23%) almost twice that of cerebral strokes (12.5%) and brainstem strokes (17%). These of course may be different now 20 years later. But it shows you that cerebellar stroke is no joke. Part of the problem is the difference in cerebellar stroke symptoms and the problem with missed diagnosis. I think about this when I think back to my missed diagnosis. I was sent home in less than 48 hours of having a massive stroke. In cerebellar stroke the days after the stroke (1st week) are the most dangerous. The swelling in this area due to tissue death and damage can lead to serious and deadly impacts. Swelling and edema in this area can lead to herniation of the cerebellar brain tissue up or down, can obstruct the 4th ventricle causing direct brainstem compression. This can lead to deadly herniation of the cerebellar tonsils into the foramen Magnus. All in all this can lead to death. Phew...I need to shop. 😡
Those of you who have enjoyed my poems in the monthly newsletter Stroke net. Will be happy to know I have compiled a book of several poems.
You know me as Jay Allen, a pen name I created while at University. I was under the impression, I had to use my legal name for publication purposes.
My legally given name is John A. Yurgens. Please take the opportunity to check it out. The book is called "Survival: Life after a stroke. Poems of my journey."
I am almost done with another book "The journey continues" I hope to have a late June or early July release date, I will keep everyone informed.
Be well stay strong.
I spotted an orange thing on a little bush out here in the secret garden that my room has a patio on. I thought oh wow, and asked the housekeeper to go out there and pick it for me, recalling how I would go fruit picking in the past. It was a tangerine. It was delicious, forbidden fruit..Small unusual amazing things happen to me once in a while.
I am so happy with new pretty shoes, athletic,supportive custom made orthotic,all paid for from diabetic medicare program
but I need to break them in,and my feet swell off and on
I wanted some pretty ones, I looked through catalogs, got what I liked, bought matching socks and tank tops
So I asked for help putting them on and the cna says why do you keep buying these shoes? ok,these were fitted,measured, but i swell, but i cannot wear slippers always
I go now to cardiologist again to address swelling
next week i go back to have fitting with shoes
prob is i get blisters sometimes when shoes loose
my feet are numb so i need to be careful
all this post stroke
meds made swelling, numbness
but I need for pain
I miss my Sandals
Pray for my happy feet
because I love these new shoes
I want a normal shoe
they said this is size,but maybe i need a wider one,seems like my size is right but foot is balloon
I expected her to like my new shoes, not complain about type of shoe
they said tie was ok just as flexible as velcro ones i had before
Well after my pacemaker implant healed up and now works fine, I also had a heart ablation. The pacemaker keeps the low resting pulse good and the ablation keeps the high pulse steady without meds. So, we are now on the road again heading ultimately for Alaska. We left Tennessee the 4th of May and are now in central Montana for a few days. Lesley’s mum is handling the trip very well, the motorhome is performing great and all is good here now. A few days here in a town called White Sulphur Springs, MT at the base of the Little Belt mountains and we will be moving on to Shelby, MT and then on to Banff, Alberta, Canada for a week.
after that on to Jasper, Alberta for a few days, and then a few weeks of roaming around British Columbia. After that, on to the Yukon and finally Alaska for a month or so. Then a slow return South on a path yet to be determined but will likely include a trip across southern Canada thru Winnepeg and maybe a stop where we used to live in Northern Minnesota. Should be back in Tennessee sometime in August.
we had talked about this trip for many years but never seemed to get it done. Then when Lesley’s mum came to live with us it was decided. She and her late husband had always wanted to ride the rails across British Columbia thru the mountains, but never were able to do it. Lesley and I had planned to see the Canadian Maritimes, Nova Scotia and some other provinces this spring and go to Alaska and British Columbia next year, but now that mum is living with us we just flipped the trips and will do the Maritimes next year so we can fulfill mum’s dream with our motorhome this year.
so we are blessed with good health, a wonderful 95 year old mother to travel with, and the opportunity to do so. I have nothing to complain about, life is very, very good to me at the moment. Yes I had a stroke, yes I still have some deficits and still take a few meds, but all in all life is being good to us.
time for a tea.
Today the activities director gave me a set from costco and she ordered 2 book from an author I adore. This is special since there are other pencils there to share. This is all mine. I feel grateful, happy, and loved. It is a miracle gift. I cannot wait for t*he books, especially since onc
e it was promised before, but budget excuse ruined it. Getting new pencils is a miracle to me, with a sharpener and canvas pouch.
Kindness rocks. I have to pay it forward too. I regift books I do not want that are sent to me.
Since the AFO got put on wrong by the nursing home Dan can hardly walk. We make it a few steps and his affected leg just buckles. We have told the nursing home we want him PT assessed and maybe take a look at his AFO... Dan weighs about 70 LBS less than when the brace was fitted so maybe he just needs a new one. Pity cause the old one is a very good one. I was told they don't make them like that anymore. always something... right... lol
Happy Mothers day Everyone. hope every one celebrated mothers day in their own special way. I did too, I feel so grateful & blessed to have wonderful son & hubby who made sure that they follow my orders on what I want to do on mothers day :). and we all had great time together. We went to see great Indian movie & I also feel same way how lead role character tells his son to do when he dies, whistle instead of crying when he is gone, that's what I am telling my family too, I m telling my family to do the same, whistle with joy that I lived my life with full of joy.
I am thankful for this stroke also which gave me second chance to enjoy my family and this world with complete different perspective. I am grateful for all new opportunities, friends, books I have encountered post stroke which has made the person I am today. life is great once again with full of meaning & joy, nothing I do any more today without appreciating the fact that I feel so lucky to be able to do simple things in life. who would have thought doing home chores & going to bathroom without audience can bring so much joy in one's life, I agree so much with Diana Nyad who says when things gets tough in life you have to find a way. I do feel with supportive family & my own initiative I have found a way to appreciate all days. Since I have seen in my own life after dreadful day sun eventually comes out, it is just behind those clouds, all I have to do till then, is just keep my head above water & not drown myself in self pity.
I was just thinking earlier in the week how quiet it would be again this Mother's Day. Our youngest son is gone, he passed away nearly two years ago.....he was the one who always made sure he did something for Mom on Mother's Day and his Dad on Father's Day. The other two sons are married and have wives who are Mother's so the day is usually spent with their own families. Then Saturday came, and I made my usual short ride to the mailbox, taking Misha (our 1 yr. old schnoodle) along for the ride - it's his big thrill for the day! lol I grabbed the hand full of mail out of the locked mailbox and headed back home.
As I sifted through the mail, I saw an envelope from the Donor Organization of AZ and didn't think too much of it, aside from the fact it was in a thicker 5x7 envelope. I assumed they were doing an annual campaign to get people to sign up for organ donations. Upon opening the envelope, I found a letter, a brochure and another smaller sealed envelope inside. There was a note that said "please read letter before opening smaller envelope." I began reading the letter and it explained the process of putting organ and tissue recipients together with their donor families. The letter also explained that if I was not yet ready to read correspondence from the recipient, that I could hold onto the letter and wait till I was ready. or send it back. The brochure had suggestions as to how to correspond with the recipient if we wished to do so, taking into account privacy issues.
I proceeded to open the smaller envelope and inside was a thank you card from the recipient of some of Dan's tissue. The person explained that they had surgery and had to rely on tissue donation to complete the process in order to be able to get back to being physically active. They thanked us for the gift of tissue donation and said they would keep our loved one in their thoughts. Wow, I couldn't hold back the tears.......Dan is still doing for others and helping others, even though he is no longer here with us......I couldn't have asked for a better Mother's Day gift.
Many, outside of our world, will not understand. That’s why I write this for you. Or US.
How many 56-year old people need to think about walking?
Just another “Step” on the journey of my the new normal.
I can’t do all the thing now that I did before the stroke.
Before, I walked without thinking about the mechanics involved
And I always had a long stride.
Recently, I’ve realized with my old long stride I tend to limp
Causing more pain in my other hip.
I need to discuss with my physical therapist.
No need to create more issues, doing something wrong.
I have an idea, but won’t try until I get the okay from my therapist
Always leave the bigger decisions to the professionals.
Simply looking for that inner balance
Of eliminating pain, avoiding other problems.
And maybe Look a bit more Normal, as I was around town.
Thanks for allowing me to spew.
I can’t think of anyone my age spending 30 minutes thinking about walking. Lol
I know you get it.
Be well, God Bless.
This afternoon I went to the Lymphoedema Clinic for the first time, I was anticipating getting some of my most pressing questions answered. I had done what everyone does, gone to Dr Google for my answers about the relationship between lymph node dissection and lymphoedema. Most of what I found related to breast cancer but that is understandable as the breast cancer girls pioneered the use of lymph node surgery. I am very grateful for that and the surgeons who pioneered the treatment.
The girl who I saw put me through the usual paperwork, I am getting used to it now, taking them step by step through the discovery, diagnosis, surgery, recovery etc. Then there was examining the wound site, taking the measurements of both legs etc. Then she asked me could she call a colleague in and the colleague explained that I would have a new pressure stocking, measurements would be taken six monthly and on and on. I was a bit puzzled as the surgeon had said I would have the stocking at least until the end of October, so I mentioned this. The colleague laughed and said : " I don't think so, this is forever." And I burst into tears.
The girl who had asked me the questions was dismayed and tried to calm me down. I'm sure they thought I knew this was a possibility. But I didn't. I assumed the condition would settle down and I would only be wearing the stocking for long distance traveling once October ended. I guess it is like any diagnosis, I found it af bit hard to swallow. Initially it was devastating. I thought it was a case of accepting the changes, having some physio and then a new life with a new normal. Silly me.
When the colleague has gone back to her room the original nurse Connie explained that certain factors like getting overheated, stressed, tiredness and overuse of the affected leg can cause the lymphoedema to spread. So it was safer to continue to wear a pressure stocking. Dr Google didn't tell me that. So I now have to get used to the idea of having this condition forever. I can still take the stocking off for short periods of time, wear gym pants which will apply some pressure for swimming, walking on the beach with my grandchildren etc but a lot of normal summer pursuits will have to be carefully monitored because of the possibility of overheating.
I know a lot of my friends will pat me and say "never mind" but I do mind. It is another body blow, another little death, the death of summer dreams. Just the thought of finding some place to change in and out of a pressure stocking near a beach kind of denies being able to do anything without prior planning. "I'll just be five minutes, well closer to an hour I'm afraid." Nothing spontaneous about that is there? Okay, I know that is the case for a lot of stroke survivors so I am lucky, but I need time to get used to the idea.
And that kind of sums up the last couple of decades, changes that I have had to get used to. And eventually I do. But not without a fight usually. Sorry as I am about my inability to adapt to every new situation. Maybe body image is still one of the issues, I want to look and feel as good as I can for my age and circumstances. I guess we all do. I know some people are able to relate to this and others will find it difficult. After all I still have the use of both my legs.
How long is forever? Nurse Connie said it is like today, tomorrow, the next day and the day after that, if I can think of it that way it won't be so hard. Perhaps the survivors will understand that. I can in a way. I did a lot of that when I was a full time caregiver for Ray just looking a few days ahead, not too long ahead or I couldn't adapt to the sudden changes. And we all know how suddenly life can change. Hopefully this won't be the case for me. Until the next set of tests I can pretend nothing else is going to happen can't I?