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.
So much has happened I don't know where to begin.
My brother was buried yesterday and it was the hardest thing for my family that I can remember. I will tell you that man was he loved...by so many. The visitation and funeral were full...family, friends, business acquaintances, co-workers, and a multitude of others. All of whom grieved heavily for my brother. Everyone so kind to everyone in our family and sharing their memories and offering to be there for whatever we needed. I feel so blessed and know my brother was and was so loved.
It has been a difficult tragedy to bear. There are questions...concerns. There is an ex girlfriend and her brother that have affected things. Though they had been apart for about a year something caused them to be in contact within the last 3 weeks. It wasn't anything good. Her brother showed up at my brother's house and my brother must have felt real reason to call the police. Troy wasn't the kind of guy to depend on authorities when an issue arose he met it head on and took care of it. No one bothers him. He is calm and quiet but he knows his rights and everyone around has always respected his "space". It had to be something bigger for him to involve the police. When my brother passed it was 3-4 days before he was found. He didn't show up at work which was highly unlike him. Troy was a workaholic. He NEVER missed. His co-workers went to his house and the back door was wide open but Troy would not answer when called. They didn't go in...They called the police. He was found in his bathroom on the floor in a pool of blood in a state of rigormortous and decomposition. His head at the opening of his closet and the remainder of his body in front of the bathroom vanity. His house was taped off and processed and his body was sent to the medical examiner's in Nashville for autopsy. His co-workers said they only had a number to his ex girlfriend and she was called. She came to the house and said Troy had no family just her. When it was discovered that it was my brother my sister was called and came right away. The girl said she knew nothing of my sister or anyone else. My sister told the Sheriff she was not family and was not welcome on the property and she was told to leave and not to come back. This infuriated her. The locks were all changed and his home was patrolled off and on through the night. In the morning my mom, sister, and his daughter came to the home and this girl had broken in an was going through the house. My mom found her looking under his mattress. They walked out without her seeing them and called the police. They arrived and knocked on the door and she answered and invited them in like she lived there. She was arrested for felony trespassing, felony breaking an entering, and after searching her car, purse and self...felony theft. She had stolen many of my brother's things and was filling her car up, purse, and body. EDIT: She also was staging his home as though she lived there. She had placed framed pictures of her and Troy around the house. They weren't there the day before because I was there and there were no pictures of her period anywhere. END EDIT. Later that night a male called my nephews phone and said "There better not be anyone at Troy's house the next day."- he thought he was talking to my brother in law (it was this girl's brother). She also showed up at my brother's visitation on Friday night. She had colored her hair and her and others in her car tried to get in. She was told to leave by the director and was told that she was not welcome and the family did not want her there and not to come back. If she did not leave she would be arrested...So She left. We never saw her yesterday but were on edge that she may show up again. So it's been weird and we are all left with questions. He is suspected of having a heart attack but the autopsy will take a bit of time for more answers.
My dad did well earlier this week adding chemo to his treatment. His doctors have suspended all treatment until Monday due to my brother's death. He is taking this hard though he tries very hard to not show it. My mom is a rock...She always has been. My niece (Troy's daughter) signed executer of estate to my mother because she is still so young and doesn't know what to do and also because she is very pregnant with her 3rd child and due anytime. She has stood like a rock but it is breaking her inside. He was her first born. You shouldn't have to bury your children.
Me...well I have been having problems for some time now and this has just multiplied it by 100. I went to my Neurologist the week before last and to my Psychiatrist this past Thursday. 3 seconds after he walked into the room a lightening bolt hit so close and so loud that I almost ended up in the floor. I went into an immediate bad panic attack. Crying was uncontrollable. The next hour was filled with tears, fears...It felt like a nervous breakdown (I'm not sure I really know what that feels like but that's what I thought). He told me that my Neurologist had already called him about me and she acknowledged the CCAS and wanted to fill him in before I came Thursday. I was surprised. It made my crying worse. He talked to me about my disability because he knows I am harboring a lot of stress over it and asked me what is frightening me (I just got a hearing date not long ago). I told him I'm terrified of going back to work because I know I will face stress everyday that I can not handle anymore. I'm afraid it will be turned down again...I'm terrified of exploding from the anxiety. He told me he did not want me to worry about disability that I would not be able to work again. I cried even more. He gave me Nuedexta and was glad I had lost it in his office so he could see. He is hoping this will help and that some of my anxiety is coming from PBA. It has not been a kind drug so far. I am so nauseous, tired and seems like a fre other things. So we'll see.
Thanks for listening and please send a prayer for my family to help them and me through this heavy time. Thank all of you so much! I feel like many of you are an extension of my family and I love you.
Just plodding along, hoping for better days. I have a head cold so feeling down and this is another of those times when I want to scream: "Where is the person who is supposed to take care of me?". It is hard not to feel resentment after looking after Ray for so many years. I seem to have few days like this in winter every year. Yes, it is hard to be on my own when I am feeling sad and shaky but there are no money back guarantees in life and I have to remember that. I can please myself when I go to bed, when I get up and what and when I eat. But I still have to get used to the fact that freedom and loneliness go together.
There is always plenty to do this time of the year. My six week course on Better Health Management takes up Tuesday morning, and the rest of the week seems to fly by. I haven't learned anything new while doing the course but it has reminded me that now I need to take care of myself the way I used to look after Ray. Not an easy lesson to put into practice. The long dry period has affected the garden and it looks more like late summer than early Spring with plants showing signs of stress and the lawn drying out. I do water the pot plants as needed but the August winds are drying them out so they look dessicated, not holding out much hope for Spring bloomings.
Our Lions Club has been raising money to go to farmers out West to buy stock feed. We are in the middle of a long term drought and country people have run out of water. I can't watching the news as it all seems like gloom and doom, dying sheep in dust bowl conditions but it does affect me in other ways too as I have friends who are on the land. Sometimes it is a very hard life for them. I haven't heard from some of them for a while but if you are hand feeding stock there is not a lot of time for anything else. I understand that.
I just had a phone call from my sister-in-law in Queensland, she is worried about feed for the few cows and horses she has on agistment that she has on her acres. She have always had a farm of sorts and worked outside the property as well as many wives do. At over 70 she is starting to find she doesn't have the strength or the energy she used to have. If she and my husband's brother were to leave there they would find life very different. She has three cats and three dogs as well all used to the country way of life.
I had a phone call from her daughter last weekend. I call Kim my best neice as she visited me when I was in hospital after the operation. She lives just out of Sydney. Unfortunately the opposite side of Sydney to where I live. She is worried about her Mum, thinks the farming lifestyle is too much for her. I guess my kids worry about me too, we older folk are too fond of our independence in their eyes. I want to be independent for as long as I can but know that like the old ladies I look out for that will only last while I am well.
Ageing is a worry and more so if we live alone. I don't know what the solution is, the government wants us to stay in our own homes for as long as possible, but as we get older we get frailer. At the moment I don't need services but who knows what the future holds? The last lot of tests showed no new problems but one of the future ones might. It certainly seemed easier when I had a partner to tell my troubles to. Now I find I exchange thoughts with some of my widowed friends who are in a similar situation.
Whether we care for someone or are the one needing care our future is undetermineable and often feels out of our control. Which is why we need to take life day by day, getting out of each day what happiness we can. I do try to live life like that. I have certainly lived an interesting life, if a trying one at times. I rather thought I had earned some peace but I guess we all think we deserve better. Roll on Spring.
Yesterday I finally had my ablation on my heart to stop the rapid heart beat. I wasn't nervous for my cousin, who is a cardiac nurse and also had this done, walked me through everything. It didn't hit me that I remember them adding the adrenalin to make my heart race so they could find out where the 'road block' was. Basically, you have two tracks that the electrical currents in your heart go around that keep your heart function. So Imagine you have two tracks above each other but the one with that contains the faster of the current (: if you get excited or caffeine your heart beats faster and you also have a slow lane that keeps the balance- ) well one of mine didn't have a complete track because one of the tracks had extra muscle that made the faster currents speed faster in half the space.
When the current would get trapped in the smaller loo[p, my hear rate would jump to 240+ beats per min. SOOO..
When I felt them making my hear to go fast, my jaw started to hurt, I began to sweat , same as always, but when it stopped I thought they stopped the medicine for I didn't feel the usual chest pains but it just stopped beating fast. That was the time when he performed the procedure and fixed the problem.. it is amazing.
The down side is they went into both side of my groin so pain, no driving, no swimming, no lifting.. To most people that might sound like a day off but no driving to my Aunts house to swim in her pool.. But I can drink coffee.. but I'm still scared but he ( the Dr) said it was textbook so no issues. Same day.. Long day. My parents and I left my house at 4:30a for the 90 min drive.. put on to prep at 7:15a wheeled into the OR 8am finished at 12pm.. post op full bedrest until 4:00pm.. leave hospital 4:30pm (Philadelphia Rush Hour) made it home by 6:45p.. My son, 15, stayed home with the cats.. don't blame him.. I slept partially seated for my pelvic area was so sore.. Better today.. Apparently I emailed people while still drugged lol
I spent 5 days in hospital for cellulitis in my good left leg brought on by lymphedema and other swelling stuff. They do not have oxymorphone in hospital so I took oxycontin. It did not work as well plus they did not wake me up around the clock for my meds even though the doc told the nurses. I suffered. But I got treatment. Then released to thehome. Only to find they discontinued all meds after 3 day absence. So think this would be easy to get its all back again? They did not order my meds and they ran out. And no one could fix the code the pharmacy needed except my doctor that was MIA.
Then all fixed by a traveling nurse who took charge.
So I have to heal. I hurt.
I have fluid now congestive heart failure. I got through it. Healing
Pain management clinic is only for clinic time now.wow.
Last time the fellows were so nice but hey things change.
I just ask for help.
and I try to get rest.
I felt alone but then son is busy and ill. I was just me. I feel ill still but I enjoy painfree times. coloring.
Lemme just get all the emotions out at once. I've been pretty terrible lately. It is definitely time to see my shrink. Thank the Lord its Thursday. Let me go through my new range of crazy. I'm depressed, my anxiety gets so high I feel like I will burst, panic attacks almost daily, seeing things, hearing things, scared because I don't know if I am seeing things or hearing things, sense of utter doom Bad Bad Bad, the crickets made me have a panic attack, I keep hearing thunder rumbles but feel to my bones that something horrible is coming...plus I'm not even sure I actually hear thunder but it's there, I have been barricaded in my room 75% of the time lately, sleeping as much as I can, I don't want to be awake, chronic headaches, neck pain...Oh yeah I have that mass on the side of my neck, crying, crying, crying, hyperventilating, completely paranoid, obsessed with trying to find answers on the internet which makes it worse, feel like throwing up a lot, obsessively sanitizing, obsessive in general, oh did I say terrified at times? I think there is more but I'm too tired to write it. So what has happened? Ok so I found out my disability hearing is October 25th good right? My dad was diagnosed with stage 1 non small cell adenocarcinoma of the lungs 'm about a month ago. He has been doing radiation for 2 weeks now and started chemo today. He has a 85% cure rate...another pretty positive note. My extremely narcissist ex boyfriend of 10 years that I left a year ago because he replaced me with a 24 year old 30 years his junior has contacted me twice in the past month. My stepmom is neurotic and a clean hoarder ( I still live with my dad and stepmom for now). I found out today that my dad should be putting the toilet seat down and flushing twice when he uses the restroom. He NEVER flushes pee. He is diabetic, has COPD but in the last month has quit smoking and drinking, has beginning stage kidney disease and now has cancer and has to have poison given to him...radiation M-F...chemo every Monday. He checks his sugar, takes insulin, all without applying alcohol to any place a needle goes and hasn't changed his Lancet in forever. I've been sanitizing as much of where my dad touches as I can because he is overly susceptible to infection plus it is a safety factor for myself and my stepmom. I asked him to flush with the potty seat down tonight (I can flush the 2nd time before I go). He yelled at me and said I am not a Dr. and that the next person can flush after he goes and if they don't like it they can go outside and then told my stepmom they needed to get me a dog outhouse. I am thinking of his exposure or extra exposure as well as mine and my stepmom's. I think he feels ostracized and that I am a reason for that. Sighs....maybe I am. I don't know. I've had to call my mom every night to be talked down including tonight cause I can feel my heart racing and beating so hard. I couldn't get in touch with my daughter for a few days...her phone was cut off and it took a few days to have enough money to turn it on again. I was extremely stressed about it and worried something had happened. Yes this is a total pity cry, pooh blog, or whatever else it can be labeled. It is my reality though at least for the past 3 weeks. Can somebody say thorazine please. I am going to go watch YouTube vvideos of kittens now. Night.
Yesterday was both an exciting day and frightening for I submitted my first job resume in almost 10 years. My doctor hasn’t entirely allowed me to work a part-time schedule but I’m looking for just that. I see him on the 20th if this month and will talk it over with him. The reason being is, to no surprise for many survivors, I can’t play my bills.. I mean I can but it will only leave me with under $100 for the month, and that’s not including food or property taxes & car insurance. I have been talking about this a lot but I had to start paying for my Medigap insurance. What that is is Medicare only pays for 80% of a bill and sometimes less than that so the Medigap, or Blue Cross/Blue Shield of New Jersey, should cover the rest. We all know some medical bills can cost a small fortune and when you’re on a fixed income, repaying what you owe can be darn near impossible. Being under 50 and a resident of New Jersey, I am limited to just this insurance and if I don’t get that insurance, I cannot get a Medigap plan again until I’m 65 years old. Pretty crappy… yeah…
I didn’t realize it would cost me so much for my plans- Both Medicare and Medigap. Almost half of what I get a month. Thankfully I have P.A.A.D (Pharmaceutical Assistance to the Aged & Disabled) I’m not sure if it’s just in NJ but anyway that covers my medication. So I know every little thing helps but yeesh.
So back to my resume- I was a my DVR (Department of Vocational Rehabilitation) and we talked about the ARC of Cape May County (Mission Statement
The Arc of Cape May County, Inc. promotes and protects the human rights of individuals with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. The Arc of Cape May County, Inc. is committed to enhancing the quality of life of those individuals and their families through direct services, advocacy, empowerment, education and prevention.) So as you can tell by the mission statement that is a fantastic place to work for in another life, I worked in an institution for those who were well bad off. But I digress….
Every job that isn’t basically winning the lottery sounds way beyond my abilities. I know I’m walking into the unknown and I haven’t even got the job yet but I worry that I can’t make it. I mean I get super tired after a busy day. I know I’m just putting on the brakes of what my mind is telling me because it’s a new thing. I really need to just see what happens and talking to my doctor (Neurologist) and be thankful I have a contact coming to me that will eliminate the bouncing in one eye and be grateful for those things.
Being an adult stinks sometimes. Thank you for letting me vent and I apologize if I’ve ranted a lot about this but as with everything else... It’s a first for me.
Since my stroke, I have been living as a guest in my niece's home. Her daughter, my sis, also lives here, in the finished basement of an older tri-level home in a very small Indiana town.
Honestly, life here suits me fine. I have everything I need, even though I need help with a few things. I do feel that I am capable, both physically and mentally, to live on my own, in my own place, and sometimes I do feel some slight guilt at my imposition on the niece and her family, but she did invite me, without limitation, to stay as long as I like or need. I don't want to feel like I am taking advantage of her or my sister for their generosity and hospitality. I do pay my share of rent and bills, but more important is the fact I am able, while living here, to save money. Up to, in most months, $700-800 per month, and am aware that the longer I can deal with the guilt feelings I can save a good sum of money ,if I stay another 18 months, to get me started in a new, independent existence, probably a couple hours north of here where I would be closer to doctors and medical treatment.
This is something that is constantly gnawing on my mind, and I am a very impulsive person. so I am a bit scared that one of these days I am going to succumb to impulses and move out prematurely before I am really prepared financially.
This is something I have dome many times over in the past. I can actually admit to occupying over 20 different addresses over the past 14 years, including a couple homeless periods when I lived out of my car in Florida.
I honestly, as an unattached single person kind of enjoyed the homeless lifestyle, free of responsibilities, but in my current physical condition I think I would be too vulnerable to attempt the homeless thing again, as tempting as it may be.
Truthfully, too many lingering and transient periods of hopelessness and thoughts of self harm haunt me, so indecisive I be, for now, until hopefully my mind settles enough to make rational decisions.
My mind, with all it's crevices and dents, is a prohibitive factor in my decision processes. at least I am able to recognize this about myself.
I always had this dream of just living from day to day sleeping wherever I could find a spot for the night, constantly moving, indulging the generosity and hospitality of whatever stranger presented opportunity, but then I would catch myself, suddenly recognizing my own limitations in the socialization department.
WTF is wrong with me? At times like these I feel even more of a freak than normal...
But it must come out, and empty this mind of this scrambling, I must..
Just one more rant of admitted loneliness to deal with so, happy Sunday, I guess, for now.
Once a year the Stroke Club I belong to gets together with four other clubs and we have morning tea with a guest speaker. Today instead we had a group survey as a charity fund has given a donation so that the Sydney based group can supply two coordinators to help the other groups extend their services. It is a great idea and addresses the problem of resource poor clubs going out of business for lack of new members. Our club is a flagship club as we have a lot of people sent to us by medical professionals.
I have been a member of WAGS since 2006 and still belong because I can support the other caregivers and survivors on their journey. I have some wonderful friends in that Club who have supported me in so many ways. The discussion group I was in all said that they didn't know how they would have survived as well as they had without the love and support they had received from fellow club members. I agree wholeheartedly. In the bad years being able to tell others exactly what was happening without fear of criticism made such a difference. We all need that, people who love us without wanting us to be perfect, or even rational at times.
I am so grateful now for friendship. Just to know that people love me or simply care about me makes such a difference. When I am not well, when I am looking at my life and not liking what I see in the future, when I am looking at the mud not the stars is when I need to know that I am accepted by people just as I am. I support others as much as I am able to, I have always had a great love of people, all kinds of people, and that keeps me going. Today I had lunch by myself in the shopping centre and just sitting watching families eating, laughing enjoying each other's company lifted my spirits.
My family do love me but their busy lives mean they don't support me day to day. I know that is typically the case for many others here, we are here, they all live some distance away. When Ray and I were both well and had the campervans there was no problem visiting family and friends but that decreased after his strokes. Now for me as a widow it is hard for me to decide to travel alone to see friends who are spread far and wide. And few come to see me. So it is easier to stick with local friends and leave those further away to be contacted by email or the occasional phone call which means we lose the closeness we once enjoyed.
I had some good news last week when I saw the Melanoma specialist, my PET scan showed no hot spots so that is one clear test.I need four to be fairly sure I am out of danger. One down, three to go. I do have several other health problems to tackle so my specialist is making me an appointment with a neurosurgeon to report on the aneurysm in my brain. She said now she has seen it in the MRI she must take the step of involving another health professional. That is another set of appointments to add to my calendar. But knowing what I do about stroke it is better safe than sorry.
I am doing a lot of hospital visits, people from the church as well as friends from the community. One of the members of another organisation I belong to has a brain tumour, another a broken shoulder from a fall. My special friend Lyn has been in hospital for four weeks from when his chemo caused his body to shut down. He is slowly recovering but three days on the floor without food or drink have taken their toll. That certainly is a warning to those of us who live alone to make sure others know what is happening to us. I am aware it could happen to me under certain circumstances. I am doing a short course called " Better Health Management" which emphasizes the need to keep fit and take care of ourselves. I know I need to exercise more and keep myself strong.
Spring is slowly advancing, sadly with no rain and most of the Inland in the grip of drought. A lot of our wheat, sheep and cattle farmers are in dire straits. Meat prices are rising and the cost of vegetables as they are sourced from distant markets. But I have a roof over my head and food on the table. Really we have little to complain of don't we? That is why we need to be thankful for what we have and mindful of the needs of others.
I do have love hate relationship with my husband, in some things he is angel & I love him for his behavior & in some cases he will act so indifferently that you wonder does he really likes to be with you or not. like I say he is great dad & husband in taking care of his responsibilities, you feel relaxed because you know he will make sure things gets done. but ask him anything I would like to do like go on some fancy vacation or going to restaurant, he will be least interested & you wonder whether he likes to spend time with you or not. but he does not stop me from planning it, but he is least interested in showing any enthusiasm for it. So I feel I m dragging him & that reduces my joy, though after every time we go on vacation together because of my nature of going with flow we end up having lot of fun. So I hate that part of him, anything I want to do his first instinct will be to say no & then he will come around saying yes which reduces my joy. finally after my stroke I have learnt only I can control my happiness & not give any button of my happiness in other people's hands. But I hate that feeling as if you are living unattached single person, cause I would like to feel as family who takes care of each other joys & sorrows. Just writing down my own thoughts & confusion about life, love & family
Tomorrow my dad gets his first dose of radiation for his lung cancer. We are all just in a weird wondering mood. My dad is in good spirits which I am so glad. The very next day he gets his first dose of chemotherapy. I pray it is kind to him or at the very least that he is able to be ok with it physically. I know if the chemo is too much that he can just raise a white flag and the Oncologist is really supportive of this. Just praying for whatever he goes through.
Tomorrow I go to my PCP to hopefully get some answers about the lump on the side of my neck. My ENT wants me to go ahead and see Dr. Coil because it will be quicker than waiting for an opening there. The therapist said he may send me right back to my ENT and that was ok but he can do initial research into what it is. I have just kept it off my mind...kept my thoughts on my dad and try to give him positive vibes. So keep us in your thoughts and prayers and send an extra prayer for my dad. Thanks guys.
So many things in this squirrel cage mind...
My three year anniversary of completion of radiation and chemo for throat cancer approaches..YAY!!, I guess, but not sincerely feeling it.
I turned 62 a few days ago. I was worried about that one. Both my eldest sister and oldest friend passed last year, each within weeks of, but short, their 62nd birthday's. I had envisioned some omen there, but here I am yet.
So my Oncology appointment, along with a ENT appointment, a Primary care appointment and Psychiatry appointment, topped off by a good old fashioned colonoscopy Oct 2nd.
So very much joy awaits me, and then hopefully, should I survive it all, a return to my sedate, reclusive, and non-eventful existence.
I did have the brief excitement this week of taking a roadside tumble on my little Pride Go-Go scooter at about 1AM a couple days ago as I went out in an insomniac fit to check mail. Luckily, mailbox directly across street from house, and traffic was light, but I was barefoot, and in great distress and foot pain trekking that short distance, hobbling and wobbling, without cane, back to my humble abode to seek assistance retrieving my trusty steed. A slight roll in the gravel and grass, coupled with the humility of clawing my way to my feet and accessing the damages to my person and properties.
Here I sit, days later, again at my post, typing my woes and apparent self pity into the ever accepting abyss of humanity.
The Psychiatrist appointment, of course I dread, with his never ceasing inquisition into my possible inclination toward self harm or community endangerment, which I always deny, with pause. I don't know that I can ever really say that I have no thoughts of self harm, because I do, constantly, but not continuously. I can't say a day goes by that I do not contemplate my death, in one way or other.
The most that I can really say about life any more with all my "baggage," is that life is tolerable, acceptable, I guess even satisfying, in some way that I would in no way be capable of explaining. I could NOT say, however, that life is actually "enjoyable," beyond the occasional brief, yet transient moments that flutter in and out of my awareness like a feather in a hurricane.
The most enjoyable moments of my existence really seem to spring forth from the moments that I am struck with the inspiration and motivation to write.
I do love writing, even the hunt and peck, one finger style writing that I have adapted, and to which, no doubt, many others in the stroke community have become familiar with. I take a lot of online college courses via Coursera, edX and Khan Academy. I need that daily stimulation and mental challenge.
I do think that this particular episode of my writing has reached it's conclusion, and that perhaps sleep, for a brief period is now imminent.
My son gets me cards regularly to share with another lady who plays solitaire 27/7. She is 93 And hard of hearing. No words needed. When we get together to play we go for 2 full hours until the next meal. She is a serious player. I get distracted chatting with others sometimes. And others come begging to be dealt in a hand of Rumy. That is what they play with her when I am not around....and I have not been in a while....And my son had my tote bag with cards for safe keeping the last couple of weeks while I did procedures.....So TODAY we played cards.
There are some strange people here that are pure toxic....3 that are at eachother....like kids.....I never know if they enemies or friends.......and their common bonding is a woman with dementia that they parent..protect...common thing unites a band like that....
and today they were going on about how they did not have any cards to play with...because me and the card shark were doubling down on double solitaire.
Oh no cards around here or games of any kind....
So we played on
she taught me
and I havə a passion for it
I love this game
I am surviving winter, in five or six weeks Spring will be here. This has been a cold winter but today was mild and most people seemed to appreciate the day, even saw some out in short sleeves. I am in my busy week, hospital visit today, birthday morning tea tomorrow, church women's meeting on Friday I still like to be busy just not too busy.
I have started a new course called " Better Heath - Self Management" It is a free course, a government health initiative to tell us to meditate instead of taking pain medication, or is that my prejudices showing? When I talked to the group about my problems with Lymphoedema I got some blank looks from the nurse conducting the course so I guess she has some research to follow up on. Ignorance is not always bliss. I have an appointment next week with the Lymphoedema Clinic. What I am hoping to get from the course is some help with my gait since I am having trouble walking down stairs still.
The family are doing well now, all the grandchildren back at school. I did get to see the three grandchildren from Adelaide but not Shirley and family as they were suffering from chest infections etc. I think we will all be glad when Spring arrives I don't know what plans to to put into place this year with all the restrictions of my health problems. I can only fly for three or four hours so my plan to go to England next year is no longer possible. I can't do international flights at all now. Such a pity with all my cousins in England and Canada.
So what will I do when the warm weather comes? Think local. Be happy I am still relatively able bodied. You would think by now I had learned not to keep worrying about what I can't do and concentrating on what I can do. But moving forward through life changes is always hard to me. For me life settles into a routine I can live with, the next minute that routine is interrupted and I feel as if nothing works in my world. One thing leads to another and everything is wrong. It takes a while for me to see a way forward again and find my new normal. So my new normal now is venture somewhere within a more realistic distance from home.
My life is still full with church and the Lions Club and the various forms of volunteering I do. Last Saturday the WAGS group had "Christmas in July" an Aussie custom that is just an excuse for a mid-winter get together. It wasa great lunch and a good afternoon of catching up and I really enjoyed the company. I do keep in touch with as many people as I can but old friendships do fade. Sad to see signs of strain on the faces of some of the older caregivers now and know that in a way I am fortunate that part of my life is gone now. I am glad I was in good health when I had Ray to care for.
So I get the results of my tests next Wednesday and go to the Lymphoedema Clinic on Thursday. There is always some anxiety about the results but we all have that when we have tests. I will continue to take life one day at a time and get what fun out of each day that I can. I am looking at life ahead of me as calmly as I can. And yes ASHA I am trying to go with the flow.
I have found out some more info about my dad and his cancer diagnosis. He has non small cell adenocarcinoma, it is extremely near to his esophagus and because of that inoperable. He will be starting radiation treatments on the 30th of this month. They will be lower dose than usual but for a longer time so as not to injure his esophagus. They did find 2 lymph nodes that are near and seem to be somewhat enlarged but they scanned him last week and there is no cancer metastasis. So it is still in stage 1 but like stage 1b because it ha increased in size since May. Non small cell carcinoma is good because it is much slower growing and has a much higher rate of beating it. We found out today that he will also have chemotherapy starting on the 1st of August. His odds are 80% with radiation only and 85% with radiation and chemo but it was the Dr.'s decision whether he could have both. The oncologist he spoke with today said that they have a lot better ways to relieve side effects today and he would have a choice to discontinue the chemo at any time if he felt he could not take it. My dad said today that he already feels better just knowing....it took so long to get answers and it gave him pretty bad anxiety. All in all I think we/he has had the best scenario there could be and we are all thinking positive.
On Mondays, for the time being, I go either to my Aunts house or other members home and knit. I learned how to knit from my grandmother but learning after stroke is basically learning all over again. I enjoy it. I enjoy the company of the group. They are very understanding of my speech and having my Aunt there helps a bunch. She has been knitting for a billion years and with in 3 weeks ( she says she really didn't have time for this.. yeah right) she knit my little cousin a sweater jacket. A SWEATER JACKET.. I made a thing... it's kinda a scarf.. or a pot holder mat.. I know I'll get there....and yeah she can also knit with out looking... It's tiring.. mainly for my eyes but it will get better. I'm not sure how long I can stick the Mondays for in a few days, I'm going to Department of Vocation Rehabilitation ( DVR ) t seek a part time job. My doctors have only cleared me for a tiny bit, like 4-6 hrs a week, but I can't survive on just me. As with life, we all must persevere
Sunday is my super soul Day, I get AHAs by dozen & it is fun to see my whole journey getting validated by so many others who have walked on similar path of suffering I had been through when I felt such a huge loss of my dream of how things should be shattering into pieces, but realizing in midst of all that suffering not everything was broken, even though I was all broken open. I am so blessed to be married to such a great guy along with my sister reminding me to notice those positives when I was so much surrounded by all the family & friends 24X7. I couldn't have asked better family than my own. Anyhow back to sermon I got today on my super soul Sunday where Mark Nepo was pointing it out that realizing this in midst of suffering that not everything is broken in your life even when you feel like there is nothing left gives person strength, I know It did help me when I was surrounded by so much love even when I felt like my life was ruined & I didn't have any reason to live.
We have completed our Alaska and Canada trip about a week ago. I have attached a few pics of the trip (I think). It was everything we had hoped for and more. We left Tennessee May 4th and got back in mid July. From TN we went to Iowa for some minor repairs to the motorhome at the factory and then on to the corn palace in Mitchell, SD. Neat place. Then on to Devils Tower, Wyoming. From there on to Banff. Alberta, Canada. Mum loved every minute of it she was like a machine gun firing out questions about everything we saw. Kept Lesley and I on our toes!
Lesley and I shared the driving everyday. I drove in the morning as I am fresher then and she drove in the afternoon. Lesley took a driving lesson last year with our motorhome and so I had complete confidence in her driving ability. She drove up and down the mountains without any problems and did a great job of shifting gears, etc. Mum was the wildlife spotter in the passenger seat.
from Banff we went to Jasper, and the Icefield parkway between the two is spectacular. Mum saw an avalanche in progress on the way. From Jasper we went into British Columbia into very remote areas., Prince George, Pink Mountain, Fort Nelson Laird River and a few others. We went into Northwest Territories and saw the buffalo there. Very remote area.
we took the Alaska Hwy to Whitehorse, Yukon and stayed a few. Days and hit a Walmart to restock. We saw large beards of buffalo, many bears, moose, elk, caribou and some other things. We did see a mommy black bear with three cubs in tow. Neat! We camped on lakes and true wilderness. Finally on to Alaska to a town called Tuk. And then on to Fairbanks where Lesley and I took a flight in a small plane north of the Arctic Circle and saw the midnight sun. Then on to Denali National Park and mount McKinley.
Then on to Homer, Alaska and George went fishing for Halibut and sea bass. Yum! Then on to Seward and the Fiords National Park via a cruise ship. We then wrapped up Alaska and returned to Whitehorse, Yukon. Our plan was to head to Dawson City, YK for some gold panning and then back to British Columbia. Unfortunately at that point mum started to have what we think were TIA’s. We immediately headed south to get back into the lower 48 states as soon as possible.
after three days of hard driving thru Canada we were back in the USA and four days later were back home in Tennessee. We called the local doctor while still on the road and he agreed to make a house call and did so the day after we got back. He diagnoses likely TIA’s and heard some fluid in her lungs. He increased the Lasix and suggested oxygen. Since then she has recovered well but we are staying close to home for awhile.
we all loved the trip and are most happy we did it even though we had to shorten it a bit. We have created memories that will be with all of us forever. Mum’s late husband Bill would have been happy so see what we did and I can only hope he was looking down with a smile.
on the medical side, both Lesley and I are well, I am a bit out of shape due to lack of exercise and so will spend the next several months working out most every day. An exception will be for a short trip I will be taking next month to see a longtime friend in Texas. Lesley and Mum both tell me to go so I guess I will.
well have to go now.
Part of my problems after stroke are psychiatric in nature. It really upsets me to be so strongly affected by every little thing. It is an emotional rollercoaster even without any physical stuff at a moment. As I said before I haven't been feeling well and have been really tired on top of post stroke fatigue that never went away. My dad woke me up screaming this morning around 6am that my cat had puked a lake on the floor and I had better get up and clean it up. I told him I would clean it but was still half asleep and fell back to sleep. I had my alarm set for 9 this morning and I got up and put some clothes on to drive and meet my step dad for a moment. It was while I was dressing that I heard the angry scream from my dad to get in there. So I took some carpet spray and a handful of paper towels with me as I headed for the back door. Just as I was about to clean up the spot he told me that the next time I don't get up when he calls me that he was throwing my cat outside that he wasn't living in filth. So sometimes my mouth says what my thought is before I can make a judgement whether to say it or not. My stepmom is a (clean) hoarder. She won't throw anything away or donate anything except food and truly gross stuff. So I said " You already live in filth everyday." Then told him again I was sorry and that I hadn't felt well. He screamed well I don't feel good either (my dad just found out he has lung cancer). I told him I knew he didn't and I had not said a word to him to fuss about anything. So I finished cleaning the spot and threw away the dirty paper towels and then headed for the door upon which he screamed "Now where are you going". I let him know I had to meet my step dad and would be back in a few minutes and left. Of Course the tears start falling as soon as I shut the door. I cried all the way to the grocery store. My step dad said he was sorry my dad cans I wore fighting. He also said that October is not that far away (my disability hearing). But then said you are going to have to get yourself together and only you can do that. I hope you get good results from your hearing but if not then you'll have to do what you need to do and work and get out on my own. I just told him I know. I wonder why I see my Psychiatrist every 2 months and still have panic attacks. Or why I take depression meds, anxiety meds and ADD meds everyday. I just need to get it together. Right? Right. Invisible. No matter how hard I try. Can't help but feel that way sometimes.
For the last 2 nights I have fallen asleep around 7pm and woke up for about 30 minutes before going back to sleep. Each night sleeping 11 hours. I had a Dr. Appointment yesterday due to some chronic hoarseness I have been experiencing since January. She poked all around my larynx area (painful) and I showed her a lump I have on my neck (wasn't sure it was there but she says yes it is and the Dr. needs to know)(she is a voice therapist-part of my treatment). Anyways, I'm thinking great. Now we go forward to last night around 12 and I woke up feeling sick...neck pain, muscle aches and joint pain, headache, sore throat, general Ill feeling. I was also extremely tired so I went back to sleep until 8 this morning. Today my sister's step girls are here while she and their dad are at work and my patience is low. My stepmom is at the dentist having 6 teeth pulled and a lower denture plate placed in. My dad now with his diagnosis of cancer tells me to help my stepmom today and complains about the girls warning their ego waffles in the toaster. The nurse calls from the ENT office and tells me to make an appointment with my PCP first about my neck and then we'll go from there. I have already cleaned the kitchen because I do that. My stepmom left a bag of dirty clothes next to the downstairs door and that means wash them. I am nauseous and my fingers feel swollen and I feel like crap. I just want/need to lay down and rest. Oh and I have to take the trash out. Lord please give me the energy and the patience to get through the day.
I get it done thank heavens. I pray all goes well with sedation and spinal. I trust. I trust it will go like before. I hope there is not some student there that freaks out when I yell stop. It just comes out....I yelled get this done and it seems it took that guy forever but he was told by doc to continue numerous times.
It is painful procedure. I take sedation in IV, they put airhose with tiny things in nostrils. All is well. I climb on table which is scary for me. I feel like I will fall and I go slow. Tomorrow I am going in the chair.
The promise of relief gives me courage.
I will see son this weekend.But just to bring my stuff. He is always busy. Of course.
When alone I cry for my daughter and my grandchild I have been denied knowing because my daughter thinks I failed her,failed to love her. I ask son. he was there too. he sees another story. Anyway I wonder how much hate does she have to stay away. But maybe she cannot phone me my number is different now I am in new area. But wait she knows where I am could google call me here. wow. she never misses me. hard to take. I feel shame humiliation. being a good mom is something i was proud of worked at.
guess she is busy being mom to sick baby.
I try live in moment.
but I miss who she is. our closeness before i had the stroke.
some days i think why did they bring me back when i stopped breathing then feel ashamed bcuz my son has loved me well and I love him.
I cannot believe she will never be my daughter again...then I am furious for putting me through this. I never chose stroke.
I never chose stroke. my life was not made better by any law suit or thing. I never see now as good as then ever. U suffer. I am not just inconvenienced. My family was torn apart over stuff.
now years later i cannot even recall it. seriously. i just miss what good times i do recall. when i was proud grateful. but wgat was more real.
I just want her.
I opened the gift bag for grandson. she said I gave too many stuffed animals. funny. my mom said I bought too many for her.
there is pattern here. and not my compulsive bunny buying. not much.
so this tiny lilac grey with grey scarf will not be regifted. I keep it in my bag. i sleep with it.
not grown up enough?
I color all day.
lol. small funs. living being. that is all. ok.
I have a gratitude list.
I am glad of things. small pleasures are big ones. My body seriously is damaged.
my mind follow it.
but still not enough help. temp help. no hope for something more.
Dan has had 2 uncles die in the past 1.5 months. Although he was close with them back in the day and up till the stroke would go home and hunt with them , they had not put any effort into coming to see him or reach out in any way. So when Jimmy died - I figured I wouldn't tell him, why- things good and bad like that create depression for Dan and by default depression in me as well . But one of Dans sisters decided to stop and see Dan at the home on her way home from Jimmys funeral and told Dan about it- so that blew up in my face. It had been 4 years since she had made any effort to see Dan but had to stop in and create some chaos. I don't think it was malicious - just thoughtless. although Dans family did make a "hub -bub" about no one from Dans family being in attendance.
So when "Terry" died I told Dan, and he wanted to go to the funeral ( he was closer to Terry ) , so we did. So we got hugs and a thanks for coming. But his family chose a inaccesible place to sit together and no room for Dan. So we sat in a area by ourselves. Some aunts came and sat with us and other various family as well. But Dans immediate family just stayed at their table and never came and talked to Dan . I could not have gotten him and his chair over to their table if I had tried. So we ate and we left.
It was a very uncomfortable experience. I guess I expect to much. And in reality, if situation was reversed would I be any better ? I don't know.
On another front - I have a friend who came home for a funeral from Oklahoma , Her and I were close back in my old work days. She has had 2 kids and her husband is a genuine POS who just can't keep a job, can't be trusted to help with the kids, doesn't pay her opinions any mind, lets his family treat her like garbage - etc. etc.... the is is a smart hardworking girl. But through the past two or three years has only reached out to me during the bad times in her world. I have helped her financially, I have offered to pay to bring her "home" . But she stays in that bad situation. So she came home was at my house rehashing her life and I finally just said- Your married to a POS and the only person who can change your situation is you. She took it ok at the time. But musta ruminated on it through the night, cause she was gonna call me in the morning but never did, and I found out she left town. I feel bad, but - Im not a good person to whine to, especially cause I got my own issues . And I have helped as much as I can. But I also know she has no one in her corner, so I wish I woulda just kept my mouth shut and stayed in her corner. And I am still inner corner. as I texted her and said when and if she needs I will still make good on my offer to help her move "home". Life....
Well, it's been a long road to hoe, but Dad passed away on March 14, 2018.
While it was not a stroke that did Dad in, I'm sure the history of the stroke and diagnosed vascular dementia helped. Per the death certificate, the doctors called it "End Stage Dementia".
Lots happened since the last time I was on and even posted, but as a quick timeline...
Dad lived with me until April 2017....
April 2017 - Moved into Assisted Living
September 2017 - Had a cognitive issue that required him to be "in respite" on the rehab side of things. It was meant as a temporary holding space until the memory care unit opened up.
Early October 2017 - Got pneumonia
Mid to Late October 2017- His kidneys failed and he ended up with a "classic" catheter and 50% kidney function; and was placed formally in the nursing home.
Thanksgiving - 2017 - The "classic" catheter was changed to a permanent supra-pubic
December 2017 - Things were okay...
January 2018 - I started noticing him dropping things and not really with it.
February 2018 - I was helping him with a special treat and at one point he could not tell that he was not holding it and was chewing his own finger; more dropping issues;
Early March 2018 - We started him with the in-house doctor as it was too hard to get him out; She recommended that it may be time for hospice.
March 11, 2018 - Hospice paperwork signed
March 14, 2018 - He was gone
So now I have to relearn how to live my life. I put so much on hold while taking care of him and being so involved even after moving to AL. It's only been 4 months, sometimes it feels like yesterday. Other times, it's easier to bear. As much I know saying something can create the situation, this first year is going to kinda suck. I've been to my therapist and we talked about the fact of his passing and realizing that I'm now grieving mom finally too. Dad moved in with me in Sept of 2013; Mom had just passed Feb 2013; His strokes all happened in Jan 2014. I never had a chance to properly grieve for her. Now I'm reliving her passing and coping with Dad's passing also.
So that's it in a nutshell. I had wonderful friends throughout this that helped and are still helping me. I'm still struggling from time to time, but it will get easier.