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 so look forward to my Sundays with my AHAs with super soul sunday & being married to my very spiritual, practical soulmate, my life is very rich with all ths AHAs. Today oprah while interviewing bradley cooper for his role in star is born as actor, director said "Art is kinda form of prayer", my husband quickly added Any work you do is a form of prayer, & AHA light bulb went in my head, its so true any work we do, if we do we should be doing as form of prayer, such that even if its volunteer work or you are working for money, or doing duties as mother & wife, it should be done as our prayer to God, & we try to do our best with our capabilities & not get attached to results, will give us most satisfaction in life
I guess I haven't anything fantastic to say-- I just realized it had been so long since I checked in . Its been a cold LOOOng winter in North Dakota-- although sounds like it has been for all in the USA.... Dan is doing alright--- the fiascos of the nursing home continue... He taught the aids and admin a lesson . He is very OCD - he asks the staff to take garbage out with them when they leave the room. They did not, kinda a passive aggressive thing with the staff . apparently it got left overnight, so the next day he flushed the garbage down the toilet, plugging the toilet. So they take the garbage now when he asks. Typical Dan -- Lots and lots of staff VS Dan power struggles . I just chuckle - anyone fighting with a brain injury - aka stroke . Is gonna lose. Hope all is well... NancyL
I have a lot to be thankful for. My daughter Shirley took me to see the specialist in Sydney today. Luckily the heat of yesterday was replaced by drizzly rain but as usual that just made the traffic worse and so our two hour journey took half an hour longer. I know why I love my part of the coast so much, it is because I would much rather listen to the sound of waves rolling in to shore than the sound of squealing brakes and the horns of impatient drivers. Or park by the lake instead of trying to find a parking spot among the high rise city buildings.
I have several tasks to do when I get there. I filled in the research paper I usually do on my post operation feelings which becomes part of a national survey, then I was interviewed by one of the associates which is part of their training and then I can see the Professor herself. It seems there is not any sign of further melanomas, no signs of secondaries. I do have some age related problems which the young doctor explained but these can be seen to one at a time. I don't have to see the specialist again for twelve months pending two more tests to come, one a biopsy and in March there is the brain scan and the visit to the neurosurgeon.
I am so grateful for everyone's prayers. It was a tiring day but just to know I have passed the first year without a recurrence of the melanoma and no secondary sites is a great relief. I still will have some residual pain from nerves damaged during the operation but that is a small price to pay. I have been given another year and will make the most of it. My word for this year is enjoy and so far there have been few days I haven't enjoyed. My life may be shortened by this past year's troubles but it is still a good life.
The week leading up to today was busy with all the tests but even then it was an interesting week. After one of the tests a woman friend picked me up and we went to lunch, a thoughtful gesture on her part. I am blessed with good friends. I don't have family close but Shirley is only and hour and a half away. I also had lunch out with my ex-daughter-in-law and caught up with her news. She is the mother of my grandchildren who live in Adelaide with my son and his new partner.
I am lonely still, really no getting around that. I have plenty to keep me busy, I have friends locally I can connect with as I do, but when Ray died the centre went out of my world. But we widows and widowers just have to rebuild our lives and I have done that. Like any rebuild it includes things from the past as well as relationships which are more recent. The friends I have now are from different parts of my journey. It is inevitable that relationships change when your partner's dies and some friends drift away and new friends take their place. And of course at my age many older friends die.
It was nice to have my daughter stay overnight and to and from Sydney we talk of so many things. She told me she now uses a lot of the sayings she heard from me and her father and her kids say: "where did that come from?" It is good to have a laugh together. I know she is busy and am glad she feels she can spend the time with me. It means a lot to me. Now it is onwards and upwards. No, I am not fixed or cured or guaranteed a future but for now I have a good feeling about the year ahead of me.
it has to be stroke deficit, but sometimes when trying to think through simple technical problem, one minute I have things crystal clear in my mind & then after 5 mins it just disappears& I keep on trying to get to the solution & just chase my own tail in developing simple software code, which should be so easy. It is so frustrating the way I am doing my volunteer work, I am glad its volunteering or else I would have been fired so long ago. though people working in my team must be thinking such an idiot can't figure out simple things. but I guess that's the reason I am retired from the work force since my cognitive skills are impaired
This Feb 8 it will be my 15th stroke anniversary valentine day. I can't believe it has been 15 years since I have been to valley of my life's journey, though old wisdom is right you find out who is truly yours when you are at your rock bottom, who is willing to lend you hand & get you out of mud. I found out who truly loves me & willing to stand by me when I was in my worst shape of my life. my siblings, mom, spouse, our son were biggest motivator in me pushing hard to fight for life which is now very stimulating& satisfying.I never knew I could still find so much happiness in my life, even when it felt like my life was over. I guess being stubborn & go with flow personality helps. I guess If I want something or believe in something, I won't give up. & me believing that I have full responsibility towards our son & he deserves better mom, made me always push myself more, & seeing positive results of it, made me push my boundaries even further. & after 15 years on this journey. life is good again. its different than how I would have envisioned it, though there is still lot of joy in it, Since we started celebrating as our valentine day I don't dread my stroke anniversary, I actually look forward to it. Its usually Broadway show with nice dinner & flowers kind of family date. Anyway I see lot of good things have happened in my life last year. I pushed envelop little further which have helped my self confidence even further. Few things I learnt hard way, but my life is richer due to it. hope whoever is reading this blog, never gives up & keep fighting & see how beautifully life will unfold for you the way it did for me
Every now and again something jolts me back to reality, today it was the post on Facebook by Steve Mallory announcing that our friend Denny (Dennis Jeffries) had died. Denny and I talked frequently during my years when he was a chat host on Survivor Chat and I was chat host for Caregiver Chat. He was also my friend on Facebook. Like so many of my friends on Facebook and Strokenet we never got to meet in person but nonetheless we were friends. In this modern age this will be so for many of our friendships. My heartfelt condolences to his beloved wife Peg and their extended family and all those who knew him and valued his friendship.
As I minister to the older church members in my own church and others in the organisations I belong to I am probably over familiar with death but never inured to it. I know each death robs us of a piece of our history and breaks down some of the bonds between us and others. All we can do is to remember those friends who have passed, remembering why we liked them, what we shared with them, remembering all that was good about that particular person and the ways in which the friendship enriched both our lives. We also need to remember those they left behind.
I have just had my daughter and her family here for the weekend. Not her husband as he had injured his back trying to start a stubborn water pump so he stayed home for some bed rest. It was only a day's notice so it was unexpected but turned out to be a really fun time. My grandson Chris starts University this year so is a grown man now, his sister Naomi is 14 so quite a young lady so it was funny to see them playing with the toys Alice aged six had got out to play with. The Nintendo Wii got a bit of a workout and more so on the second night when Pamela and the three Adelaide cousins joined us. I guess that is when I realise my house is small when five teens and near teens are fighting to see who will be the challengers in the new Wii games.
I do so enjoy having my grand children here, every time I see them I can see the changes in them. With Trevor and Alice's visit the first two weeks in January and then all the others last weekend I have been so blessed with the amount of time I have been able to spend with them. The Adelaide kids are going home in a week's time to start back at school, they are all doing well according to their abilities. I love them all and want the best to happen to them but have no illusions about them. Like Ray and I they will have their own struggle with life. They know Granma prays for them, but only two fully understand what that means.
Summer has been very humid so it is out shopping etc in the morning and home in the afternoons. I have to keep hydrated and remember to take some time with the affected leg elevated. I have just lined up all the appointments and tests for the second week in February prior to seeing the melanoma specialist, with more tests before I see the neurosurgeon in March. I figure this is all for my good, remembering especially that this is prolonging my life so I can look forward to seeing my grandchildren grow up. I have felt the negative effects of wearing the body stocking toes to waist bevause of the humid weather but try to remember that too is to ensure I live as full a life as is possible.
On the whole life is good and I have many blessings to count. I have a roof over my head, food on the table and many good people behind me challenging and supporting me. At my age I know that as long as we have love in our lives we are truly blessed.
I have a sinus infection,yeast infection,fungalinfection,and need to use a bipap machine but cannot breathe with my nose right now....
Nutshell of misery is enduring the virus that I am hosting in my body
My body that feels constant pain in my right leg for no reason except just because ...and it is not a belly ache as some mock. NO it is burning at the stake pain, a live amputation. I Do So have a good pain tolerance!!! I have been through labor and childbirth and a C section. Ok boys try being sliced in half to pop out a baby and then being stitched inside stapled outside and then pop a baby aspirin so I can breast feed safely. And foolish women sing the joys of experiencing the natural experiences so I did I until those double peaking contractions that failed to do much.....yes pain and me are old buddies.
This nerve pain is childbirth Godzilla steroid style. It is dental pain wile your finger is stuck in a light socket. Ok....so I am getting an implant to turn it down....does that prove it is a not normal pain yet???
So then my incontinence issue is not a thing except the stroke added more weakness so I wear a leak prevention pad....my ego identity is involved here...
So when I got to snf, they did not offer pads,but had pull ups or diapers. It took no time to love pull ups. Easy convenient yet often leaky but ok I missed undergarments but never had to worry about lost laundry....
But the home does not proedvide pull ups now
I cal)led the ombudsman twice.
She said the home is obligated to provide incontinence supply...and it did. Maybe not what I wanted but they did not have to provide pullups or pads. Not even maxi pads.
So I spoke to my PC, she understood and sent an order to the medical supply Co and......I was happy until it called me saying they do not deliver to nursing homes..they provide stuff. Ok.
So I will.
Does any one get this get me?
Should I be taken at my level
...but they say all the same....
No one comes to change me
See they said i am independent not incontinent.
What dictionary are the using?
I cannot talk anymore to statues.
But I am sitting in a diaper.
I am here.
It falls when I walk.
Comes off when I pull up my pants
It sags to my knees and it is dry.
So they came in and said you need larger ones. I said I am swimming here. They brought bigger ones that are prettier color but when we put it on it was nearly a one piece bathing suit. So back to other one.
I will adjust to this.
As I always do.
But I fight to not be in a wheelchair.
It hurts to walk so bad.
When toilet was out in my room i used commode. Not a bed pan.not a diaper.
So they told me to change myself.
I need coordination.
I cannot do it.
So I will purchase some myself for outings but here I am in diapers.
Why is my identity fighting this.
I am having problems yes.
As all of you aware by now I love watching Oprah's super soul sunday series on her OWN channel. I love listening spiritual awakening books or discussion, since I always learn something new from them even if its repeat. This Sunday was no different, when facebook COO sheryl Sandburg talking about her book lean in. Book she wrote after sudden death of her young husband while exercising on readmill while family was vacationing in costa rica. She talked about how post traumatic growth can also occur in person instead of stress after traumatic event happen in person's life. I fully agree with that statement, but I also feel having solid support system around them helps, she talked about how gratitude helps, I also feel having reason bigger than yourself also helps to pull yourself together, & given enough time has passed also helps. you can see how things finally have unfolded in your life & seeing everything fall into place again more beautifully, you can see that beautiful post traumatic growth she was talking about. it was one of my AHA moment of Sunday.
After hearing the radiologist insist I return immediately for a biopsy my gut reaction was of course THIS is not happening. I asked for a 2nd opinion. She returned and said the head of the dept. Of this prestigious teaching medical university hospital in So Cal_ said two areas of interest and one should be done immediately and the other area could be checked at next available appt. Wow. It sounded serious. They even scheduled and all before insurance pre auth!
I cried. In front of the student intern. I asked for a kleenex as I covered my face and silently unsuccessfully held back waterworks. I never cried when I was told I had a stroke. That came nonstop later. But the idea of csncer destroyed me. Shoot after losing everything in life do I seriously still need hair or boobs?
And I hurt. The electrode trial was done. I needed RFA as I wait for the implant procedure. Yes I decided lickety split to just DO it. Relief is worth it.
So I went and the tech took another mamo on another machine I sat on. The doc came in and said the three disagreed with what they saw. Then she returned and said they could not find that area again! What?? Apparently it was some tissue mistaken she said.
I thanked Her for patiently answering curiiosity about the procedure. She apulil.
peared to happily talk about her work. The intern was helpful because it was difficult for my vestibular system to climb in the chair endure dizziness and then the kind doc could not find the thing! She said it was too small@! She did though and clip a flag so next time it would be know, it was checked.They showed it to me when we were done. WHITE dot! The doc expected it to be B9 And in 2 days she called me and said it was!!
It was painless. They numb it up A tiny slit is made for the biopsy device and then steri strips are applied with bandage dressing. Mine bled and came off so nurse reapplied them. They lasted more than a few days but then fell off on oys own. A tiny pink scar remains that I strain to see if i should vicitg a topless beach.
I celebrate life this New Years.
I exchanged gifts with family and friends. I share with people here.
I helping a woman get a free cell
Phone here. I hope still)going on.opp09)
I must share.
I also wearing new shirt and navy blue nail polish and living stylish. Coloring with expensive pencils from amazon deals!
Still pain. Endless. But life is more than it
Happy New year everyone. time is flying by so fast. 2018 got over so quickly, My 2018 was year to be grateful for, lot of new & challenging things happening in my life, though with those challenges also came feeling confident in myself was biggest reward Though lot of times during year felt like giving up, but with not giving up, I see growth in myself. I grew more confident in my ability than inability. Now 2019 is here, year brings in lot of anticipation. I am scared & praying hard for everything to fall in place for our son. Its year full of anticipation & I wish & pray all his hard-work pays off & he is well onto path of his chosen field.
I think 2019 could hold so many happy beginnings. I'm excited, a little scared, feel blessed and look forward...something I haven't done in a long time. I have never lived alone! Believe it or not I'm 47 and have always lived with someone else. For the first time ever I am really looking forward to living with just me. 🙂 (and Kitty) I'm trying to take in all the new things happening since I was approved for disability. SSI, Medicaid, SSDI, Medicare, retroactive benefits...it's all a lot. So I'm taking it one day at a time...thinking about planning...trying not to think too much lol. Of course this all comes during the holidays which for me seems to be awash with anxiety this year. It's different. My brother passed this year, it's been a year and a half since I've been single, my daughter is having a rough time financially and emotionally, and I feel a weird sense of alone. I know I'm not...my mom, stepdad, dad, stepmom, sister and brother in law, his 4 kids (my nieces and nephews), my sister's kids (niece's and nephews), and all my extended family. I am far from alone. I have secrets though, things I don't talk about often. When I was 3 days old I was adopted (my birth mom was my dad's sister [I call my adopted parents mom and dad btw] and my birth father was a family friend). Both have passed several years ago. My birth mom of a massive heart attack...my birth dad of a brain tumor. So I guess some of my history will always be unknown. This is the first year I have reached out to my two half sisters and something happened that scared me (not good for PBA ); so I haven't reached out since. It's not my half sister's fault which makes me feel bad that I had to step back but I did what I had to do. My whole family including my two half sisters knew about me (the truth). I grew up completely bonding with my family. They are my dad, my mom, my sister, my late brother, etc. etc. My half sister's, however, have emotions about me. So do my dad and his other sister. Recently my aunt and one of my half sisters said how my birth mom was never ok after she gave me up. When I was grown with my daughter around 2 at the time she came to my dad's while we were there. She couldn't stay around me and she wept quietly outside. My dad even had wet eyes and there I was not knowing how to feel but there were no tears. When she passed I was with my then husband and Hailey on our way to Disney World. So when I wasn't at the funeral it bothered my half sisters. It's been something I haven't been able to deal with since then. I did reach out this year...after my brother's sudden death. I just kept thinking "you never know what life can bring you the next day...no regrets." It was a moment...I wonder if it sounds horrible that I just say that. My stepmom had to say something to my dad's sister about saying things to me like "I really feel that Betty (my birth mom's name) mourned herself to death over you. I think giving you up had a lot to do with her death." My half sister says the same thing to me. Well how the f<¿|| do you think that makes me feel. Not only have I felt like I don't belong anywhere at times but to add the knowledge of another person grieving themselves to death over me. It's just too much. I was fluffing 3 days old...it does not help me in any way to know that another made a choice about me and it was a horrible decision for her sanity. I am not responsible period. But these things hurt me inside and I tend to place that pain (whether I should or not) deep down in me. So it will visit me at moments. I don't think my mom, dad, sister, etc. know I feel this way. Inner demons...I suppose we all have one. So Happy New Year and pray this 2019 year brings happiness, healing, direction, and prosperity. (((HUGS)))
Tracy wrote in a reply to Janelle that it is hard to get her head around the fact that we in the southern hemisphere are in summer and a hot one at that. It makes the Christmas we have very different from what most of our readers are experiencing. And it is hard to imagine unless you can think of the Fourth of July and Christmas coming together. Then add mosquitoes, bush fires, heatstroke and crowds of people flocking to your town from the nearest big city and you are starting to get a picture of my kind of Christmas. Despite all of that we, the Aussies and those who have made Australia home, love it.
I did go to my daughter's place for a couple of nights, had a good time without too much trouble, enjoyed the Christmas Eve supper my grandson prepared and the lovely Christmas lunch my son-in-law cooked, going to church with the family etc. I got quite a collection of small gifts, the flavoured teas and home made jams being my favourites. As the grandchildren are now 19 and 14 there wasn't the noisy excitement of younger children but it was still nice to see them open their presents.
My daughter drove me home late Christmas afternoon as they were heading off to see their other grandmother the next day and in a way I was glad to be home. The run-up to Christmas was very busy this year as I did extra shifts on the Lions Club raffle in our local shopping centre. One of our younger Lions had a stroke the week before Christmas and I replaced him as well as another Lion who finished up in hospital with pneumonia. We all push ourselves too much and end up with stress related illnesses if we are not mindful of the pressure. Anyway all that is behind me now.
So my word for this year is one I have had before - ENJOY. I aim to 🎉 celebrate the life I have regardless of the way the year influences my health etc. I am learning that I will only be happy if I plan to be happy. I can no longer guarantee good health, or prosperity or even what will happen from day to day so I just have to accept that. I am blessed with people who care about me whether they voice that or not. I found out through the journey of the last year or so that people express love in many different ways, through flowers, food, visits , phone calls and dropping by with a cup of my favourite coffee. And of course emails and comments on social media.
Some here are some thoughts for the year to come. Firstly to stay as positive as possible regardless of whether I feel lucky, happy or in control. Secondly to go on loving people and in whatever way I can to help and support them. This will include keeping in regular communication with some people I have neglected this year. I found out just before Christmas that one of Ray's favourite cousins had died five months ago. I guess I need to still send letters but to follow up with a phone call if I do not get a response rather than doing nothing and getting bad news later.
I have a more exciting period coming up with a visit from my younger son Trevor and granddaughter Alice happening next week. I am not planning life for the next two weeks after that at all, I am sure we will be out and about, at the beach, visiting her cousins, having picnics and enjoying the summer. How my ageing body will stand up to that I don't know but enjoy it I will. That is a promise. And hopefully without negative results.
So I wish you all a healthy, happy and prosperous New Year but if it doesn't turn out that way I wish you the strength to carry on anyway.
my wish finally came true, I always wanted girlfriend group with whom I can talk to about anything that is in my mind. Finally it happened, & I met with 4 other ladies on Friday for lunch at one of the person's home. It turned out most of them are way older than me & are now grandmas, only one person in there was still young one. but what I have learnt from joining this site that even though most of the members who I met here initially were older and from different socioeconomic, but underneath we all were struggling with similar emotions, So I think I will still give this group shot & see where it will leads me. I am realizing how blessed I am & kindness of higher power, who always helps me out.
I sat on the table with a pair of leggings on and a thin robe undone clutched around me like a shield warding off the words no woman or man wants to hear.
And No person with CPS can tolerate.
The radiologist wants me to schedule a biopsy ASAP for 2 suspicious spots in my L breast.
I said BUT I am going to have an electrode implanted.
Then the following words floated in the air hovering over me making sense no xsense then just being:
"Oh you people who don't want to live another day in pain are hard to convince early detection saves lives."
Wait what?So I almost cancelled this appointment for mammogram redo plus ultrasound because imagine they removed the wires connected to a battery to a computer program HELPING me be comfortable for the first time in nearly 5 years. Who else knows what pain for 5 years feels like or lets word it this way who else did not want to live another day because of pain? We are a real group of human beings.
We who do not want to face another day....
How about this:
"We who face each day in pain.Despite pain."
And hear this from the mountain top!:
I have had a mammogram EVERY year since turning 40. Including going to a cancer treatment center at medical center at university hospital at the best machines. Every year even since my stroke.
I have vestibular problems. I find standing and balancing difficult during the test. I ask them to turn off the 2 tv's with imax relaxing movies that make me wanna puke and fall over. I find that squeeze extra horrible on my numbish yet not painless right stroke side. I do it for early detection. I watched family members care too late.
By the way. I also took my blood pressure medication yet here is stroke at my side every day with pain every day.
So last year I found a necklace getting a mammo. This year I found suspicios probably not cysts in 2 places.
I want to cut off my breast. It feels contaminated now. Even before the verdict.
But the conversation was that pain was not an important issue. She said it with a smirk. Ok please let us be honest here. How many stroke survivors have not been able to live with the pain? Suicide is not something people actually talk about. So please excuse me if I feel strong and confident that I have continued to live the days given days required in the pain required. That is not scoffable. I did not allow her to insult me belittle my pain experience.
I said I wanted 2nd opinion. She showed it to department head.
Also they insert a tag on the thing that proves to be beneign so in future no one will biopsy it.great.efficient.
Yep unfair. All my head screams. This pain is punishment enough.
Will I be joining another support group?Hey is there one for those extra achievers with multiple problems.
I realize I must take care of both.
Can I fight cancer while in pain?
Can I get the biopsy??
Alright. Indulge my mental wanderings.
The wires were removed. The burn returned. All that pain. I long for meds before due time. No one sees how it hurts unless I call out but then they scold me.be patient. Wait your turn. Be stronger I tell myself.
To go in public I must shower.
I did 3 weeks trial.3 weeks sponge baths.3 weeks washing hair in the sink.
So I showered.sitting. But every pain felt. Oh I went in right after pill so covered. I was wheeled over to the showers.
Going to my bathroom hurts
Walking the halls hurts
Pain surrounds me.
When it hurts I hold my breath and then my chest hurts and they tell me Breathe!
Getting out hurts.
So I do not schedule.
I wait for electrode surgery day.
My day is this...moving and standing very little. Coloring and music to help me endure it. I not visiting. I hurt.I not having Xmas but I celebrate by prayer and communion. Alive. Blessed to live. But there is a life with comfort.somewhere.
I cuddle with my sherpa xmas blanket I snuggled with in the car going to the old xmas lights that I took the kids to.
On the whole I think I cope with being a widow pretty well. But as soon as the warmer nights start we have noises outside. As a widow and even before when Ray was living here still but was unable to get quickly out of bed I am the one who goes off to investigate. It may be possums on the roof, dogs overturning the bins out on the road or a group of noisy teens coming home from a party, rarely is it something life threatening. Sometimes I just don't see the cause and I might go back to bed and worry for a while but usually I am satisfied. Tonight there is a wind so all kinds of rattles and bangs but all ones I know the origins of so I am okay.
I always say we all plan for retirement but not for old age and I think that aplies to me now. I have got a lot slower since the last operation and I know that while I can still manage housework, shopping and the ordinary tasks of life I cannot do maintenance so in the New Year need to find a way to do the jobs I can't accomplish and that means find some tradesmen to do them. This is going to be a considerable expense but as I don't go on holidays much now I can use that money.
We also don't plan for widowhood so I am now putting some thought into my future again. There are two main choices, staying in my own home or some sort of retirement complex. I think I will maybe consider downsizing to a smaller place too. It seems unlikely now that's one of my children will move closer so I am probably not going to have help in this. It is not that they don't love me but it doesn't occur to them that I need help. And I do find things more difficult now since the leg operation. Every job that involves bending and lifting takes a bit longer than it used to.
And we don't take our future needs into consideration. I am thinking of our need for help and support. Through pastoral care work I deal with the elderly a lot and I can often now see my own needs in the ones I am helping. The need for companionship is high on the agenda for widows. It is easier during the day as public transport, taxis and lifts from friends help if you no longer drive but at night and at weekends that is not as available so there is a difficulty in meeting up with friends.
Technically speaking the family should fill the gaps but in fact few have family living close by. I hear that from the little lady I pick up for church and others in my craft group so I am aware of how it will be for me if I can no longer drive. I wondered if I should express these thoughts here or if I should write them in my widow blog but I think a lot of people on here also struggle with living alone as I do or wonder how they will cope if it ever becomes their life. For those of you who have someone living with you, cherish that situation. Alone means some extra freedom but too much time alone is stressful, particularly on those nights when the wind is up and I become super aware of noises outside.
The good news is that I do have people who love me. They might not be right here but they exist. An old friend in her 90s rang me early this morning to tell me she does. She had received a Christmas card from me and rather than try to write a letter had rung me instead. I know there are people who love me, family and good friends, I am not discounting that. But it isn't always in the forefront of my mind. To my mind I am very much alone. My girlfriend who died recently was one of the people who I could ring on a night like this and it is one of the reasons I will miss her. I miss a lot of people who have been good friends in my past years. It is not the same without them.
Sometimes I think the Christmas season is hard on us as people who have cared for others. I know I never really thought about the impact before I was a widow. As a caregiver I was simply too busy. Now I am on my own I have too much time to think. There is a car alarm going off somewhere in the neighborhood, another party up the road, the sound of music somewhere further away. Somehow that accentuates the aloneness I feel. I probably need to put on some music of my own and block out the noises outside.
*First let me put a disclaimer here. I am going to talk about faith (religion if I may) as it applies to me. I never want to make another feel that I am weighing their faith or lack of in any way than my own. I believe in acceptance and only strength in whatever faith you may practice. I love you just the same. If this will cause a negative feeling in someone please feel free to click out now. I would never want that.
I made a blog post yesterday that stated God had given me a gift. Just so you know...I grew up protestant and a Christian. My first church was Presbyterian and later in my teens my family began going to Baptist church. As an adult I myself have not continued this childhood tradition of meeting every Sunday for church. I have my own spirituality and still identify myself as Christian. My extended family on my father's side were never church going and for most of them this is still true. On my mom's side, however, faith, Christianity, church, etc. have always been pretty important. My mom is now married to my wonderful step dad who is a ordained minister (he no longer practices but does perform marriage service for our family if desired.). They are a praying, believing, faithful couple. Again, I accept everyone and their beliefs for who/what they are. I will always foster friendship no matter. My point is I'm not perfect and expect that from no one else...I accept you period. I am concerned that i may have said something that feels hurtful to another survivor. If so please accept my apology. You see this gift in my heart is because I have a wonderful supporting family who have stood by my side through 3 years of fighting for disability. They have prayed so many times for me and for positive help to come my way. I have been unable to work, removed my life savings to survive after stroke, have literally lost everything I possessed, live with my father and step mom, my sister has let me use her "extra" car since I moved to my dad's and pays the insurance, my mom pays for my medication, all of my belongings (nothing worth money really, just the small things I still owned when I moved into my dad's are in a storage unit that my mom and step dad pay. Heck, my mom pays for my gas to get to the grocery, to Dr. appointments or any other thing I need to drive to. If not then she, my step dad, my stepmom, and my sister take me. I am beyond thankful and I feel unbelievably blessed. I know I am. My stroke wasn't a gift. It was just what happened to me one day back in July 2015. It has and is the hardest thing I have had to endure health wise by a long shot. No gift there. I thankfully have acknowledged that out of all the bad I have taken some things away and have learned others. These things do not help my deficits but they have helped me to accept me today. I also feel blessed to have this...I know many have not received this insight themselves (hopefully yet 🙂). Still, no matter, I only wish you the very best. If anything stroke has a consequence that many feel. It can make you question, yourself, your beliefs, your faith, your body, your doctor, your abilities...simply your life. It can trigger grieving for who we once knew ourselves to be. It can make us angry...at many things. It can push us to lose hope even for a little while (or more). We may forget what our dreams were or feel they are unreachable. It can effect every aspect of our lives. We are each unique in person, beliefs, circumstances, history, our strokes, how we cope...all dynamics. I can honestly say for myself that I haven't given up, I want my dreams even if they may be different than they were before, I can finally feel I can look forward, I can finally believe in myself and in my future whatever that holds. My gift of what I feel is a prayer heard and answered. I am beyond thankful. My stroke was not a gift but my faith has given me the strength to fight and hope. I hope your beliefs, faith, or whatever you have in your life lifts you. Thank you all for all your support the last couple of years. I couldn't have felt this way without it.
It's been close to 3 long years since I began my application for disability. I never wanted to apply. I never wanted to be in a situation where I was in need of such a thing. It's taken a long time to accept. So I have lived with my dad, depended on my mom, got transportation from my sister. I have been on the roller coaster of after stroke effects, dealing with my family's judgements about these and after seeing my Psychiatrist for over 3 years every other month hearing him say you won't be able to go back to work like before. That's a hard acknowledgement to swallow. But I decided I have to live. There has to be more. There has to be freedom even for me. My mom's family are very big believers in prayer. So they prayed...a lot. So did I. Saturday I went to Nashville to get away and celebrate my birthday a bit. I was ready to be home Saturday night. I got my mail and there were 2 letters from SSA. I took in a breath...I have opened these many times since it all started. Then there were the words...Fully Favorable. I have won my disability case!!!! The second letter is from SSI...I qualify and am going.g to a meeting tomorrow to see what that means. I still feel lost lol. Not sure of how to do this. But I am game! I know many prayers went up Saturday thanking God for hearing me and for an answer. I am beyond blessed, so thankful, and intend on making the best I can of this "thing". I feel like I should be celebrating...and I was Saturday. So much so I felt nauseous...little did I know in an hour I would be in the grip of a stomach virus. Feeling better today. Thought I would share with my second family. Hugs! 🤗
Since hubby's most of the family still back in India, we do go & visit India every two years. traveling with me is bit scary sometimes, we both have to be extra careful of me not stumble anywhere & fall on uneven terrain, which in India there are plenty when we go visit our home cities & our village where construction is always going on on roads. & not railings to hold anywhere except hand of my family member.hubby always had me in his death grip lol. This year I made plan in such a way that we took halt in dubai for 3 days before going to India, against hubby's desire. hubby is never interested in going to any saudi country as an american tourist. he always think world is so big why take chances. So Egypt, Russia, North korea is not going to feature in our travel plans any time soon. We had lot of fun in our travel. In Dubai we did most of our touristy points in our three days. We did desert safari which was riding on sand dunes in SUV. you get motion sickness going up & down on dunes & feeling OMG this vehicle is going to topple now, but thankfully due to skill of driver you come out laughing. We saw most beautiful mosque in abudhabhi where you have to wear burkha while visiting mosque. you realize this oil rich country has so much money to spend on mosque, & their palaces. We had major jetag confusion in dubai but no harm was done it was just funny, we thought it was next day early morning & went for breakfast & it turned out to be still evening, so it was dinner time, only drawback was I ended up taking shower two times & we packed up early lol. We both enjoyed Dubai then on our way to India, met our grandchild (my niece's son) for the first time & hubby's whole family. hubby hs big family he is youngest of 7 brothers & sister, so its always joy meeting every one. Usually there is always one or two new member to meet in his family. This time it turned out to be new family member in my side of the family. & no new member in his side of the family. hubby said jokingly that productivity has gone down in his side of the family this year lol. This year while traveling fortunately I did not fall anywhere like last time, though my sister-in-law & brother-in-law fell, luckily no one got majorly injured & it was just bruise to their ego. We are finally home & in our bed though it still takes time to orient myself which way I have to go for bathroom in the night.
Since my stroke I have changed tremendously. I was always the extrovert social butterfly. Easily talking to anyone, making friends easily, sometimes dramatic lol...I enjoyed expressing myself. Today I am not that person anymore. I'm skiddish, awkward, easily startled, get stuck in silent mode when spoken to or stutter, a loner, don't like noise or movement or lights or the dark or people. 😧 I do love when my kitty is around me. I enjoy talking on the phone sometimes. I manage to enjoy my local stroke group meetings with about 15-20 others. I occasionally go out to eat with my mom and step dad and usually with a small group after support meeting. I don't "hang out" though, visit others, "go out", only shop for what I need at smaller stores (no mall visiting). I don't really have "friends". I'm the epitome of anti-social. I stay in my bedroom with the door closed a lot (I live with my dad and stepmom while going through the disability process). I am often silent. My dad says I should get out, have some fun, meet new people. I told him I don't want to go out and be around people or noises. I like being alone. It's easier that way. But something happened lately. A man in my stroke support group sent me a pm on Facebook. We have exchanged pm's quite a few times since that day. He knows my sister and he knew my brother that passed earlier this year. He and I know many of the same people. He even asked my cousin (we both have her as a friend on Facebook) about me and she said I would be a great person to talk with. He is funny, handsome, had his stroke 5 years ago, goes to eat with us after our meetings, grew up in the exact same area in Nashville that I lived and worked in for 10 years. We have a lot in common. 😲 I am socially...weird, awkward, terrible at, clumsy, terrified. 😐 I say things that are goofy, in my opinion inappropriate (not in a bad way just bad timing). I told him last week that I was Facebook stalking him, laughed and then said not really I'm just looking at your pictures. 😫 Who says that? It's like I'm an immature 15 year old tripping over her words. He has not answered me since I sent a message on Friday. So my head makes up all these scenarios to worry about...he just talked to me in a pm...what scenarios 😬... he didn't ask me to go out. I'm freaking for no reason other than my brain making a mountain out of hill. I talk to myself saying Tracy he is just a nice person who talked to you...he's a friend...relax. 😭 This sucks!!! I feel like a dork or at least a social dork. 😟 I just needed to vent and practice my social skills lol. Thanks for listening.
Last weekend was the Women's weekend of the Stroke Support group WAGS, I think my 10th full weekend although I have sometimes
just gone to the Friday or Saturday night, depending on the circumstances. I remember one year I got my older son to look after Ray so just went from lunchtime Saturday until after the dinner. Of course the past six years I have gone as a widow. I shared with another younger widow this year as I did last year. She is only mid-fifties and still has children in her care as her husband died young. She enjoys the weekend as a break from her usual routine.
One of our members has compiled books of photos from each year back to 2005 the year before I joined. I really enjoyed looking through them and recognising some of the faces as old friends who can for various reasons no longer come. As usual it was a sad/happy time as we remembered those who are no longer with us, acknowledging also those who were foundation members. In every organization there are those who put in a lot of hard work to make events go well and WAGS is no exception. We are all grateful to the handful of organisers who make the weekend possible.
I enjoyed the company, the food, the entertainment, but as usual especially the dancing. Of course I would love to be able to dance the way I used to but found it impossible to be as balanced with the left leg musculature being so different now from the right. But I managed to dance for most of three hours so I was very proud of that achievement. And it was wonderful meeting up again with such wonderful, brave indomitable spirits, both caregivers and survivors. They are an inspiration to me.
Coming home is always a let down and I have been feeling that this week. I am busy enough, on the Lions Christmas raffle two mornings already but my trip to visit my daughter and family mid-week and go out to a Salvation Army lunch today was cancelled due to her schedule. It is a thank you to the officer's parents, and thank yous are rare. And then news of another death in the distant family added to my sadness. It does seem as if there has been a lot of deaths within my circle lately and I think that dims my usual brightness for a while. It is a reminder of our built in use by date when those younger than ourselves die.
Really now I have no-one to turn to when I am sad, I miss my good friend Lyn for that reason, we always included in our chats news about family members, happy and sad and I have no-one to do that with now. I think it is not likely that I will make another good friend like him. I really miss my girlfriend Jean, who died six weeks ago too. It was such a shock when she died. And without those friends from our formative years to share our memories with we are so much the poorer. I am really feeling that now.
But as we know life has to go on, Christmas get togethers are starting, bring a plate to this one, book in for that one. It is not only the busy season it is also the expensive season. I have the trip to Broken Hill to look forward to and other upcoming events but Christmas this year will be with just Shirley and family as Trevor and Steven and their families have other plans. Inevitably that will happen some years. But that is when I really miss Ray and that focussed family life we used to live.
5 years ago, today. My life. my world changed in the blink of an eye. With an aneurism (intra cranial hemorrhagic stroke,
a brain bleed) and mild stroke.
It took awhile but I joined the network. The connection made have helped me so much, offering hope, inspiration and comfort during challenging times.
It is wonderful to share hopes dreams and concerns with others who truly “get it”.
Thank you, we need to look after each other as we continue our individual journeys.
Be well, stay strong,
8XyM.*I now am battery operated!
I got a chance to speak to the rep from the company ,. He was there helping the doc.
It was not that bad.
The doc said he thot they would have to stop. My bp went to 200. Ya. Hurt a bit.
But I did it!
So I had to reposition 3 times. I did push ups! Not easy on a op bed thing. But they finally got the right angle.
The curve in my back was in his way.
Then too flat.
Ok. Took experimenting. One more time they said. But my anxiety and pain elevated. I was exhausted. The total time was 2 hours on the table. They assure me now they have a map to work from and the permanent procedure will be easier.
So then arthritis in my back made it hard to thread. Arthritis? Stenosis? Bone spur.
My doc said everyone has arthritis so nothing to be concerned about.
He did say to me "You really powered through there at the end and I really appreciated that!"
Well after all that you bet I wanted success!!!
But nice someone recognized the sacrifice,the effort,the courage.
I felt a surge of pride,childlike,those words were needed. Bless my doc for the recognition and not taking all the credit. But he is heroic,he never gave up,he tried even though he thought he went overtime.
And they kept me going with the IV courage juice.
So I have just 1 lead in the epidural spaces threaded in the ladder of the spine. 8 electrodes are on the lead, impacting different nerve bundle stuffs of lower back, lower right leg and foot.
The second one is backup and not needed really.
Right away I felt my foot tingle with needles and pins. So I was taught to use the remote and tune signal down. Success!!! I am a responder!!! They said it went perfect!!!
Praise and Thanks!!
The transport driver arrived and we rolled out only to find a van without access to the seats from ramp. I could not step up. I had to go back inside,call for another,wait. 2 hours they guessed. So I was put back in reclining chair, hooked to decices,BP cuff,O2 finger thing, and quite exhausted & happy, I drifted off a pain pill that was sure to help.
Then I WAS AWAKE. Two nurses were saying Ok Shes back, numbers improving, call the doctors from a close by department,call my neurologist.
Wait.wait.wait. wait.wait. It All went well.send me home!
Two doctors asking me about did you fall asleep? Stoopid Q. I said I already know I have apnea but they want study before they send me around on oxygen. The doc asked nurses how did they notice my level drop.
One nurse behind desk was grinning and said "Her Snoring. How could you miss it?"
That is all it took for me to dissolve.
I accused her Is this funny? Sure she thinks so,she is laughing about it. Hilarious! Thanks? Is this about saving me? And I swear the nurse covered her mouth and face with both hands and they all got a huge chuckle saying no its what we look for......
So there was that annoying sensitivity of mine...but cmon, saying THAT was unprofessional and cruel when it was obviously going to embarrass me.
And I had already repeatedly told those 3 nurses that I had trouble with things moving fast ,multi tasking...like them buzzing around me caused nervous chaos vibrating around. Another kind nurse said comforting things,buzzed too but not annoying...softer buzzing yet still hurrying me. Every move hurt me. Breathing hurt. I had told that to my doc. She put it down to my weirdness.
Then they explained how risky living with apnea could be. Hearing someone say in your ear, You could pass away,or have another stroke.......tears broke,my soul broke, why had I endured so much to just stop breathing. That funny sound was me choking gasping in a final breath obstructed. What is there to giggle over?
Each doc made a speech...and both curiously reached out touch my hand. Interesting gesture that failed to comfort. Why? I just said that it was terrifying to have all the fuss...in the event something went wrong I did not dream of This Way.....
And I felt guilty they called my doc to come back.....
There he was as I emerged from the Loo...saying just go to rule things out,get what you need....
I could not hear or listen any more.
For once I understand the worldview of the autistic....
I was overwhelmed...like the kid at an unwanted birthday party. I am THE brat. The obstinate one. Unknowable. Unlikeable.
Yet I suspected the ER would send me back to the nursing home for my doc there to treat my sleep apnea.
So I said Of course I agree to go to the ER BUT I said I already have appointment with sleep study.....ok my doc arrived and the medics were there.....
So in the interest of urgency and decency....I climbed on another tiny bed.
And then the truly OUTRAGEOUSLY HILLARIOUS moments of the entire saga of the day unfolded.....as they loaded me into the ambulance, the medic says "We are only driving over to the next building. The outpatient pavilion is actually at the ER. They could have pushed you in a wheelchair there.
My Insurance WILL be thrilled!
The triage nurse said I was not going strait to a bed......as if the ambulance fiasco was discovered....she put me in the waiting room....said the wait was estimated at 3 hours. I wore a mask and lamented at every coughing contagiousness surrounding me. And then they gave me that famous turkey sandwich,banana,graham crackers, and the npo fast ended. That was all I needed to feel normal again. And I dozed off in the waiting room where no one was watching. And if no one had noticed,I had a thing shoved up my spine, threaded,pounded.....the numbness wore off. I begged for pillows to sit on,lean against.
Somewhere in there they went in same arm same place as the earlier IV but unsuccessful at getting blood. A second try was a fool wanting to use that same arm, I was not drinking water, so I heard myself screaming rather than arguing. He left and I felt they were disgusted. No comfort.
I mean the whole day was tortured. Every hour.
I scream and no one says sorry. They want an apology from me for not providing them blood.
So then they wanted me to sit in the bed reclining on my back. I sat in the chair padded all around sleep overtaking nodding flopping over and then begging for my pain medications.....as expected to need them....in the beginning.....and the doc sent me away saying,well you have had it for a while,so just go see your primary doc, you know it is sleep apnea.
By midnight this Cinderella was removing her shoes and sitting in the chair,then sleeping in the bed. Without oxygen. Even though I gave the papers, told the tale.
We will call the doc. That is a broken response,and today Between napping,totally day passed unnoticed, but tonight I was adamant. I finally said then return me to the hospital, and then oxygen tank came in for me to use while sleeping.
The medic said he had sleep apnea.
He was looking fit.
That encouraged me to resist despairing I am on the oxygen.
I wonder if lack of O2 is making me the irritable person I am. Or maybe 4 years of continuous pain. Or maybe sick of people
Who are just annoying.
Oh the old roomie who said I made it impossible for her to remain well she sent well wishes. I ignored it.