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.
An alarm clock rings in the wee hours of the morning before sunrise has made an appearance. Fred the Baker rolls over and sluggishly stops the loud continual sound. With his eyes forcedly wide open he swings his legs out from under the covers and sluggishly shuffles to the bathroom where he changes into his work attire. Still moving in slow motion out the door he goes only to reappear at a bakery. All during this maneuvering to work Fred repeatedly says, “Time to make the donuts,” up until customers arrive in masses, where he greets them eagerly with a wide variety of those glazed circles and a smiling face.
Michael Vale was a classical trained actor in New York City. He had roles in many television shows, Broadway plays, and movies during the 1960 to 1980 decades yet he was best known for his role as Fred the Baker in the infamous 1980’s commercial for Dunkin Donuts. Mr. Vale played that sleep deprived mascot role for over 15 years. When he retired there was a parade in his honor and a declared free donut day. Upon his death in 2005 the company adorned their donut packaging to honor him with the words he made so famous.
Some how as a Caregiver for 4 years to my stroke/seizure survivor husband I know that there are many mornings in which I get up the same way as Fred the Baker. Instead of donuts my mantra is more like, “Time to be a care-giver.” Now, I am not a classically trained actor. The role I play 24/7 is only infamous to my stroke survivor. There is no concept of retiring as a Caregiver nor is there a thought of a declared free care-giving day. Certainly, there are means to acquire such help and there are a few friends and family that step in to assist for a few hours here or there but mostly there is not a care-giving parade passing by my way.
The journey over the past four years has been a very rocky and mountain like terrain. Each day has brought it’s own challenges. I have become accustom to daily unplanned mishaps. As well, I do not beat myself up if I don’t get everything done on schedule. Basically, care giving is the hardest job I have ever encountered. And secretly, there are mornings I give my husband a donut because it is easier than whipping up a heart healthy meal. My stroke survivor has not bounced back to a level of recovery like many do. The seizure activity or short-circuiting of his brain has created cognitive decline. Which has made it hard for him to do most things in a timely fashion. He is listed as full assist by all recent assessments. In turn, I am the one fully assisting him. I have watched him slowly digress with communication and dialect to a point he stays quiet. He sleeps more than he is physically active. Mostly he no longer wants to get up or go out. Even still, we still greet each day with hope and a semi smiling face.
To be clear, I am not trying to advertise for Dunkin Donuts, more so I am merely using the old commercial as an analogy of how I, the caregiver, feel more times than not. When I started the care-giving journey back in 2015 I eagerly jumped in with both feet. I researched, prepared, and acknowledged all that was expected of me. Vowing to be an advocate for caregivers and stroke survivors I ran full speed ahead. Today, my pace has slowed down. Don’t get me wrong, I still advocate for caregivers while researching the latest in studies. Yet I feel not much has changed in the realm of support to caregivers and this makes me question why.
Without being too brass it just seem like stroke survivors are treated for an allotted amount of time as deemed appropriate by insurance then simply sent home with no concern to how the caregiver will manage on a day to day basis. Many a conversation I have had with doctors, therapist, and programs as to the deficiency in training and assistance for the caregiver. I am astounded at how most in the field of rehab or brain injury do not have knowledge of resources available. Often, I have found more information of things like support groups available than the people being paid to know. Of course, great help is a separate issue from any financial obligation that accumulates. It seems it always goes the route of services available for the stroke survivor that may have out of pocket expenses. The caregiver has to find means to continue their life while incorporating the role of seeing after a stroke survivor. In my case, I still work but had to cut back greatly to attend to my stroke survivor. Thus, I always feel like I am moving in a zombie state of mind. I guess what I am trying to say in noting Fred the Baker is I find it interesting that a professional actor can go down in history for an advertising catch phrase implying how tiring it is to prepare donuts. Meanwhile there are caregivers all over the world working relentlessly without any kind of notoriety. Somehow, the scale seems heavily unbalanced.
In truth, my dear readers, I care give because I love my stroke survivor and know him best but it would not be a job I would apply for outside my home. So as I end my thoughts I humbly stand today applauding to honor each of you whom are Caregivers.
It's been a while since I have written. Things are changing...some good some not so good but I'm rolling with it. I am happy to say I have started to volunteer here on Strokenet as a Chat Host since the passing of our friend Denny. This is for you Denny and all the other great members here at Strokenet. I hope I do it justice. So far it's been a joy and I have caught back up with some chat friends I haven't seen in a while. I welcome any of you to join us in Survivor Chat Room #2...my schedule is Monday 3-4 EST and Wednesday 3-4 EST but there are many other scheduled chats. Pull down the chat chat drop down list at the top of screen and check out the chat schedule.
Last time I blogged, I think it was the beginning of 2019. I talked about my past meeting my present. Things in that area have been calm since and no pressure. I'm glad. Now I will update you on my dad and his lung cancer journey that started last year. He had a scan in December I think and was told the cancer is gone. I know he felt so much relief...we all did. Then in early January his regular Oncologist called (the Oncologist that read and gave my dad the good news was not his regular Oncologist...he was on vacation). He started apologizing first before anything...more than once. That is when he told my dad that he wanted to look at his latest scans himself and that they had missed a new cancer spot on the opposite lung. He did tell my dad that he would have to have a biopsy to be sure but he was pretty sure. After the confirmed biopsy my dad was told it was stage 1 and not near a lymph node like the first and that he would only need radiation 3 times. This time would take longer and would be stronger and he would be strapped to the table for accuracy. It was a hard 3 treatments...painful because of the length, being strapped down and having a larger dose. He seemed pretty depressed. Since then we have waited until the newest scan last week. He has had pneumonia in between those times and was hospitalized but thankfully feels better. My stepmom told me that his newest scan shows a "cavity" in a new area. I put cavity in quotes because they are not sure what it is...a left over area from pneumonia or a new cancer spot. He will have it tested soon. I will update when we know more. Until then...just helping to keep his spirits up.
I blogged about winning my Disability case and 1st having Medicaid for a month and then Medicare and now Part A, B, and D. The Medicaid was backdated to June 1st 2017 and my Medicare to January 2018. So I have been busy working on past bills and collections. I've even sent my medications in since my mom paid cash for these (I could not). Having trouble though...some Medicaid says they have determined it not medically necessary, some is not approved because I got more than 30 days at a time (90 day Rx), some are even when i was hospitalized last year with a really bad chest infection and severe asthma and on oxygen (deemed not medically necessary. 😤 GRRRRRRRRR I am being penalized because I got 90 day Rx's when I could to save my mom money....I had no idea I would have retroactive Medicaid with ridiculous rules. How could I have known. Besides those 90 Rx's were the same as 3 30 day Rx's. 🙄 So it's been a sort of exhausting battle...I'm still fighting.
I also had positive dreams of being able to get my own place when I won. However, I can't afford housing on my SSDI income alone. I am going to have to apply for our state's section 8 voucher program to help me. There are 4 areas in TN and each opens on the "waiting list" for 1 day.
EDIT: I had stopped writing this blog a bit ago so there have been some changes. First, I am finally on the housing list (pre-ap list)...so happy and breathing ok ready for the next step. I am truly enjoying being a part of the volunteer team here and hosting some chats. Thank you to all of you who have joined in and please I invite anyone who would like to come hang out (check chat schedules). I am now doing cognitive behavior therapy once per week via the internet. It's going great so far. 🙂 I'll just end this blog with a hug and thank you. Things are changin...some good and some not but I am well. Looking forward to the rest of March.
Still here, still surviving, sometimes by only a thread, but we're doing okay. We finally sold the Scottsdale mobile home the end of December, and were able to get Gary's bathroom redone for a roll-in shower. I put that job off way too long and was worried my back would not hold out much longer trying to get him in and out over that tub to shower him. A $3200 job ended up costing nearly six grand by the time I fired first contractor and had to replace him with a handyman to finish the job. Technically, I should have had him rip it all out and start over, but I really couldn't afford that and didn't have the time or patience to take the phony contractor to court for reimbursement.....I was lucky to get him to reimburse me $900 to pay the handyman, in order to get the job done. We had the doorway between bedroom and bathroom widened to 36 in. so it is much easier getting through with wheelchair and I can roll Gary right up to grab bar in shower to pull himself up, turn and sit on his shower chair. He's lost a lot of mobility and some cognitive ability through all this, but we make it work.
It's been nice having my youngest sister and her husband in AZ again this winter doing the snowbird thing with their motor home. They have been across the country and back over the past couple years with that new motor home, so are now planning on buying a house south of Tucson and moving down here by Fall. This week they will be in AZ City, which is only about 25 min. away from us, so we will meet up a few times next week and they offered to sit with Gary if I need to get out while our caregiver, Carmen is on vacation to visit her son in Colorado. I may take them up on the offer and go get some acupuncture in Casa Grande. I've had those free coupon offers laying here on my computer desk for months, but never had the time or opportunity to use them.
Our daughter-in-law from Colorado was in the area for about 10 days in February for the grand opening of the new Ziggis Coffee in Chandler. She's an area manager in Colorado and travels to the new openings to help with set up and grand opening. Her original travel dates were pushed back by delay in opening, which turned out to be a good thing as she ended up being full time caregiver for our oldest son after his back surgery the end of December. He had two surgeries for spinal stenosis. I talked to him yesterday and he's very disappointed that progress is slow and he's still experiencing numbness all down left side from butt down to feet, and his right foot is numb. He's been on short-term disability for over 3 months and should have been cleared to go back to work this month, but the pharmaceutical company he works for is closing their Colorado operations, so he no longer has a job. He says he can't be on his feet more than an hour or two before his back spasms start and he has to sit again, so not sure if he'll even be able to work again. Since his wife returned home to Colorado she has also been sick with some sort of infection related to her colitis....so not doing well. Please keep them both in your prayers.
I'm hoping to get a new computer in the next few weeks, then can start adding people back on facebook. Had some problems with computer virus pop-ups, and lost a lot of contacts.
I was diagnosed with thyroid cancer this morning, my melanoma specialist Prof Saw will find me a throat specialist who can see me locally but who operates in one of the Sydney hospitals. Then the throat specialist will liaise with the neurosurgeon who wants to operate now on my brain aneurysm to see who gets to operate first. Not a good day.
I wrote that to a few friends yesterday. I was in shock, I had gone to the doctor to discuss some options and he read out the biopsy report and there it was, the biopsy had shown a tumor in the node that had doubled in size. A bit of a surprise as the last report a year ago had said the nodes were all benign. But my mother had had her thyroid out in her fifties so I guess it is familial. Dash it all. Another operation to endure. I know it is my age, for some of us reaching 70 is one bridge too far.
So it is a waiting game again. I will hear from the melanoma specialist again with the information on the throat specialist, he or she will get in touch with me, maybe get some more tests done and then book me in for an operation. It would be nice if I had a choice but I don't. Remember I had the other operations in order to see my grandkids grow up? I guess the same applies.
The aneurysm in the brain operation is more serious of course, no laughing that one away. But an aneurysm is a small unexploded brain bomb and it is either get it tied off or live with the uncertainty of when or where it will detonate and blow. That is indeed a dilemma. So I will have to screw up my courage for that one. It is a pity somone else couldn't make the decision for me but I am still in my right mind so the decision is all mine.
So how do I feel? Not confident that I have a future. I say that knowing the side effects of both operations, the downside of doing hospital chaplaincy. Some people come through operations so well, recovering fully, some people don't. Either way it is a long recovery and life will be different to what it is now. But that is the good news in what may be an end-of-life experience. I say that because one of my younger friends (58) from my stroke recovery group died this week after two massive bleeds, one on the left side of the brain one on the right side. Life is uncertain.
Where does my Christian faith come into all of this? I don't know. I have always known life was uncertain, I was a caregiver for all those years and watched Ray have strokes, falls, fits and seizures. I saw how very brave he was and how he struggled back each time. I want to be as brave and determined as he was. I want to go into the operations knowing that things can go wrong but be brave enough to be able to take that chance. That is what living by faith is all about.
So if I write a few down blogs or put comments on Facebook that don't sound like my normal cheerful self you will know why. The rain falls on the just and the unjust alike so don't feel sorry for me or worry about me. But do keep prayers and positive thoughts in your mind for me for the next couple of months as I deal with some of these awkward decisions. And help me to keep smiling when there is not a lot to smile about please.
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.