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.
On Nov 9th I will go in for the Electrode trial.
I am tired of pain.
Risky but I will bet all on table now. I live in agony in a world that sees only weakness in it not the strength it has taken to live since 2014 in pain.
And I need pain pills on time.
So the home has policy that pills given in room omly. I got stuck inthe showers and no pain pill given. Policy first.
I need freedom.
November 1, only a few days until I mark my 5th anniversary of my stroke.
Hard to believe it's been five years.
I am staying vigilant to recognize and fight off the triggers that surface this time of year
my stroke date is 11-12-13.
With all the memories issues I have why can't I forget that date? lol
So, this is a sad story but the way I acted throughout it renewed my faith in myself.
So Saturday past, it began as every Saturday at my work. Made breakfast, assisted the woman I aide with her bath, took her and another client to the closet bus stop. Basically a normal-ish day. UNTIL...
After dropping off the individual to the bus stop, we, my client or individual, as we should refer, returned back to the program. That is what we call the place where individuals reside. We just pulled into the parking lot and was walking up to our office, so I may drop off the van keys, and another individual was coming out of his apartment and had a strange look on his face and said. " we need your help for AF( the persons initials ) can't breathe. She won't wake up". I said " What?" and he repeated it. I was holding on to the hand of my client and pulled her along with me and we, mainly me, ran.. KM ( MY individual) was being pulled hard by me and I basically flung her onto the couch in the apartment and said " please sit here"
I heard the other staff in the back saying " we need to get her on the floor" because she was on the bed and we needed to perform CPR.
I didn't think I could run but I made it happen. I am not super strong anymore but I helped to get 200+ pounds off the bed in one move.
We performed CPR in two rounds each while waiting for the EMT's and other emergency personal to arrive. ( She sadly didn't make it) It was fast, that I do know.. I mean she was talking and within 10 mins she was gone. She had a lot of health issues
I did things I didn't thinks I could do anymore. I mean,it's not the ideal situation to realize this but I now know when push comes to shove , my brain wont clam up.
The only thing I did forget was ,' Lift with your legs not back' I is very sore
I still have jet-lag of happiness. on Friday celebrated another birthday with my loved ones, I feel so blessed to be surrounded by so much love. I got jackpot in set of family & friends who decided to stick by us & come in our life. feel so fortunate to have all of them in our life. like every year hubby took day off my birthday & we visited my favorite temples with our friends & dinner at one of my favorite restaurant. every one who mattered called or left messages for my birthday, party extended till weekend, my sister planned big get together at her home & sister in law made cake from scratch, so big fun party at sisters place. I turned 49 this year, I had never imagined I could be still happy after stroke. & I can be still life of party even with my disability. I am thankful for my sense of humor which is still as sharp as before, so I am still able to laugh on myself & others. I don't care about my dance ability any more, as long as I am having fun that's what matters. & nowadays I don't care what others think of the way I look or dance, I find myself very inspiring with the way I am, so fun life goes on.
I just wanted to share my long awaited happy news. I had my disability hearing Thursday and my lawyer says he is 99% positive that I won my case. He is only not saying yes you won because the judge did not directly say that in those words. The testimony questions and answers back and forth between the vocational expert and the judge ended with "There are no employable positions in the general area for Ms Miller". The judge ended the hearing at that statement. My lawyer who has 35 years experience in SSDI law all but said you won. He just said now we wait about 4-6 weeks for the decision letter. He said he also has access to my file online and will know the answer much sooner and will contact me as soon as he knows something. I just wanted to share and say thank you so much to everyone who has been so supportive. So many positive changes are coming. I am absolutely overwhelmed with joy and peace. Thank you Lord.
This transition to widowhood has been easier than expected. That is because the good bye was a long one. 3 months before William died, my son, had come down to visit. He told me that William was declining and suggested that I look into hospice. I wasn't ready for that. But it got me into really thinking about life without William. So my good bye was a long one. Then the month that I put him into hospice was the real start of the end. Everyday was like the last time that I might see William alive. Especially when I had to put that hospital bed in the living room. Then the last week was really hard. That was when I afraid to leave the house because I felt that every breath was going to be the last one. The good bye was soooo long. I am so happy that William is out of this life. He so wanted to get out of that hospital bed. But, I was not able to get him out by myself. I felt so bad. I had been able to take care of him by myself when he was able to give me some help. But at the end he could not help me anymore.
I am taking classes at the community college, taking bible studies and getting involved with the church. I did start going to a different church because the one that I went to with William would hold too many memories. I walk the dogs on long walks. I still go to the gym every morning. I like to swim and started doing the machines this year. The gym does not hold a lot of memories with William because he did not come but a few times. It is freeing to be able to be out and about. I no longer have to rush home and check on William. I don't have to stop and by him something special to eat. I don't have to save part of my lunch for him to share. I will be going on vacation with my son to Mexico. in early November. I will visit him at Thanksgiving and Christmas. This will be the first time in 10 years that I have left the house and flown. I am planning on going on a mission trip with the church to Mexico. in January. I will go on the women's retreat also. I may possibly go on another mission trip to Kenya. It is so amazing that I can actually leave the house and do stuff. Life is going on and sometimes I get a little sad. But nothing like the 3 months before William died. I will decide on when to move out to California with my son. I am going to wait for a year then get my things together to move. The last week that William was living was when I packaged up most of his things. Now, I just have get myself together and get my clutter under control and start the process of moving.
I have gotten a lot of the paperwork done. This has coincided with my pension starting. But, fortunately all of this paperwork has been mine to deal with for years. But, I hate paperwork and procrastinate.
It is amazing! I am able to sleep at night. THat last month was so hard. I could not sleep at night. William was always up and so was I. I sometimes wake up at 1AM and then am able to fall back to sleep. I am at peace. When William was here, I had to very vigilant 24 hours of the day. I did not sleep a lot. I awoke at the least little movement or noise. I just thank God that I am able to get a good night's sleep.
I'm embarrassed to say that you know I'm going to vent when I visit my blog. 😁 I do figure things out though, get a better understanding for my own sanity and well I am much better when I let it out. So, again, here's a warning beforehand that there may be some venting. That way if you are not wanting to hear it then please click out. I say that in a nice way.
I never thought I had an issue with control...but I do. Maybe it comes with good intentions but really does no good for me or anyone else. l am forever trying to "talk" to my stepmom about her issue with stuff (for those who don't know my stepmom is a clean hoarder or a collector if you will). I am in a situation where I end up having to help her with many things like, giving her medicine, washing the clothes (not mine...I have always done mine), giving her a sink bath, helping her move stuff (which she calls organizing and decluttering), look for things she has lost, she would like me to wait on my dad but it is not something I do for the most part. Janice (my stepmom) recently had rotator cuff surgery so she is unable to use just one arm...her "bad" arm the left (she is right handed). It bothers me even bringing this up to a group who the majority has experienced the loss of use of one arm or much more but it is where I find myself. I didn't lose the use of any of my extremities (this is really a good thing). I did however gain a lot of cognitive and psychological issues (it comes from a syndrome called Cerebellar Cognitive Affective Syndrome). I also have over stimulation (visual, audible and physical). I a also have trouble thinking or problem solving, like I can't explain but sometimes I can't put the facts together so that they make sense or that I can use to better a situation. Sorta makes me rigid in the way that I think and maybe not as empathetic to other's thought processes. I also have ongoing PBA or emotional liability, extreme anxiety and panic attacks that I can not control. My stepmom forever is losing very important things (because it could be anywhere amongst the "stuff"). She is always verbally complaining about it and saying how everything needs to be gone through and organized, blah, blah, blah. 😑Yes I am ashamed that I said blah, blah, blah but it's what I hear. She asks me to help her a lot or does so in a real passive aggressive way like "oh I wish my arm was better and I had enough time to do _____. -or- It's always something...I have to get the laundry done but maybe later. Well there's another wrinkle. She says this last sentence multiple times throughout the day. 😫 I always ask her are you trying to tell me something? I've explained hundreds of times please just ask...I can't get what you want. I get frustrated trying. I explained to her again tonight while she was doing this that it took me over a year to just take care of me so please don't expect that I just know what you want or need. Speak up...I mean be nice but use your words. Ok I know I am writing a book...my apologies. I'm afraid it will be long. So today has been interesting. I haven't been sleeping well because I have my disability hearing on my mind nonstop so I am tired. Falling asleep once I'm exhausted around 3 or 4 and sleeping a lot during the day. My body has been on this continual cycle of good sleeping hhabits to bad sleeping habits...over and over. I'm ok with sleeping during the day but everyone else around me is not...because that means I'm lazy. Anyway, Janice came and woke me up around 8 this morning to tell me to call my sister. (After 4 hours of sleep). I called and she oh call when you wake up I didn't mean for her to wake you up. There's that. Then as I got up to get a drink and use the restroom she started telling me a list of what she needed to get done today. I politely asked what could I get her right now and then I was going to sleep for a bit. She said oh well don't worry about it...go on and go to bed you can put my eye drops in when you get up. I explained that no I would go ahead and do it because I will most likely forget to later. So I did and then went back and layed down. No sleep though. Anyways, I got back up and my niece has brought her 2 kids over to stay while she does something and I got ready to go help my sister. I had called her back.and she needed me to help her do a few things on her lunch hour. We didn't get finished so when my mom went to lunch I went back with her and finished. She filled my car with gas and she bought me the headlight I needed (I have one out and my mom also works with my sister). So by the time I got home I was just done. I can't remember what she wanted but I told her I would do this and then I had to lay down at least for a little bit. When I got up (still no sleep) my great niece was playing in the back room and of ccourse falling over things (she is 4). My stepmom and dad fussed at her and I just matter of fact said "of course she is tripping on everything she can't help it from all the junk." I think I got up in a bad mood lol. So I went and got a trash bag and told Janice that I was going through the mass of toys and throwing away all broken or missing parts. Which is what I did. I know she cringed the whole time but I did it anyway. I then left the room and went to watch tv with the kids in the other room. After they left, Janice came in there and sat in the other chair going through a box of papers (like everyday). I asked her what she was looking for and she said health insurance papers. So here I go...ok you have 2 filing cabinets downstairs so we will get someone to bring them up and we will file all your lose papers period, throw away trash and you can plug in your shredder and shred the rest. She began with the excuses and I just got on my soapbox and went to town. This is a new blog I read about organizing when it seems overwhelming. I explained each step thoroughly. I told her that I want to help her so much but I get really frustrated because she won't let me. She said oh you can help you just preach a lot. I told her then I can't really help because I get so frustrated at no progress that I compulsively nag. She said it was important that she keep these things because her family has always gotten together to spend time and they are memories. Now she is talking about a Ziploc bag full of little trinkets that are 20 or 30 years old and broken with no actual purpose like a broken plastic box. What!? I told her that my mom's side of the family get together all the time. It doesn't make sense to me. Also, material things are not your memories...you will always have those. Sentimental things to me have use or meaning or value in my life. Not everything that belonged to someone you love is sentimental. She then said well I am very attached to my things I worked hard for them. I worked hard for everything I have...when I got sick and couldn't walk without tripping then I could see what I really wanted in my life and I knew that if someone else could find value in something that no longer serbed that purpose in my life then I wanted to give that person the ability to love something I may have loved at one time but it doesn't serve me anymore. I then just stopped and told myself...self what are you doing? You can't control this. Let it go. Now sing with me "Let it go! Let it go!!!" ❄ Wow my finger hurts. 😂 Dear God, please let this lesson sink in.
So many things have happened in the past 6 months. Difficult things and good things. Where do I begin. It's weird I can't remember a clear time line but just facts. Let's just see how much I recall. I was diagnosed with Diabetes the first of January...not 6 months ago but it is never ending. Good news is that I first was testing 6.9 on my A1C and I think in August at my 2nd class we checked again and it was 6.3! This was a really positive direction for my health. I cheat though...a lot. Will it catch up to me...not sure but as of today I'm better than I was. I quit smoking! I never spoke of this because hey a stroke survivor who smokes? BAD is all I could think...truth is too I was afraid of that judgement. I am so proud though...my Doctors as well. 🙂 I've had ongoing back issues for the last year...it usually "goes out" as I call it a couple of times a year...which means steroids and pain meds. So one down I think back in March and now (started 2 weeks ago) I have different symptoms. This time it was about 3 days of steady worsening that pushed me to call the Dr. This time is different though (heck I sorta wasn't sure what it was). It started with really severe skin sensitivity in my hip, left bum, and a little in the lower left of my stomach (seemed like female pain). Over the next 3 days it traveled from there to down the side of my leg, through my knee, down my shin, and the top of my foot to 2 or 3 distinct toes on my left foot. Skin sensitivity; dull, achy burning and pain that was always present. I went to the Dr. and he examined me making me move my leg certain ways and explaining the symptoms vividly. He is certain it is coming from my back. It makes sense, I have a bulging disc (centrally toward my spine) in the L4/L5 area of my lower back. He says he believes my bulge has expanded pressing further on my nerve root. We are trying things to reduce my inflammation. I also have had ongoing chronic hoarseness since February and been under the care of an ENT...still no resolution. I also have a lump on the right side of my neck. It aches a little and worries me but my Dr. sent me to get a CT scan and says all is ok...still there. I also have had recurrent painful episodes under my left ribs from front to back. CT for that as well and for lack of better terms I'm full of s**t 💩 (sorry had to 😬)...I'm working on this continually. Ok got all of the health stuff on to the next. Oh and I lost 10 lbs. since last year and my hopes are I haven't gained it all back! 🤗 Ok on to my dad. He found out he has lung cancer earlier this year and has just completed his radiation and chemotherapy. He goes for a rescan in November although I thought it was sooner. He seems to be doing well. My step mom is still collecting/hoarding and i still have tremendous anxiety from it. She also has been recovering this past year from surgery due to hypoparathyroid issues. Much better now but it caused brittle bones, calcium leaching from her bones which in turn caused several hairline fractures around her ankle and lower leg area. She is better now but 2 weeks ago had to have rotator cuff surgery. I've pretty much been caretaker and it's beven exhausting. This is getting better also. My brother was found deceased under strange circumstances about 3 months ago maybe. Needless to say my GAD went really out of control. Worsening depression, anxiety and panic attacks, hallucinations (visual and audible)...pretty much a mess. The autopsy and any further investigation are still not final. My mom became executor of his estate. My niece (his daughter) was majorly pregnant at the time but has since delivered a healthy baby boy. She named him after my brother her dad Troy. 🙂 My mom has worked so hard to figure his stuff out; he owned 3 businesses and owed a lot of money. Almost 400,000 on his house, over 18,000 for his truck, several workers salaries, and his estate is now in probate so all who feels they are owed can file a cLiam...court stuff and lawsuits. We found out he had no life insurance. He possibly may owe more than what his estate will make not sure yet. My sister and her husband are selling their home and taking over payments for my brother's. It's a beautiful 3 story home with a big pool and some land as well as a very nice detached garage he used as his company space. We found homes for his 5 dogs...yes 5. His river friends held a benefit and auction in his name to help pay some things. Tomorrow is his estate auction (other than the house). I thought everything would be auctioned except for what his daughter kept and the house that my sister's buying. This week I talked to my mom...my brother had 2 bedroom suits with mattresses and very high end living room furniture. When I asked my mom about those things (can't sell mattresses) she told me my sister is keeping them. She is also keeping the living room furniture and I think the new patio furniture still in boxes. 😕 So this is where I'm not liking myself. I know I of course could not buy the house. I do, however, need a bed, table and chairs, a tv, and living room furniture. I'm hoping to be able to find a place of my own and move my belongings into it but those are the things I don't have. Not sure if I will be able to get these things. Just take it day by day and pray. My sister has all these things already. A bed (several), a dining set, several tv's and 2 sets of living room furniture. It sorta hurt my heart when my mom told me. I haven't been offered a thing. Any leftover money is supposed to be inherited by my niece, my brother's daughter. I was told about a month ago that Troy would have nothing left for her to inherit. I'm torn in a way...I so desperately need certain things that I can't get on my own right now, my niece is probably getting no inheritance other than some clothes, kitchen items, and a watch. My sister is buying his house so that is certainly not something she is being given but she is being given at the very least a bed, living room furniture, and probably a table and chairs and a full set of outdoor furniture (yes she already has this as well). If you don't know, I was adopted and I guess have my own issues from that. So I feel left out I guess. Not included. Jealous maybe. Needy. Mad at me for feeling any of this. I never expected to get something of my brother's. I also never expected my sister would either...if anybody I expected my niece would. I'm ashamed. Hurt and ashamed.
I am the person who is afraid to make decisions for the fear of getting it wrong. Since I feel happy & my ego gets boosted when decision I made turned out to be beneficial for our family. So any big decisions when money is involved I put it on hubby, which is not good way of being strong independent woman. Its not that hubby doesn't make mistakes, he does too, but he never makes it equate to him being failure. when hubby makes wrong decision, he has courage to stand behind that decision & make it right again, in some he looses but gains valuable experience & confidence, which I lack since I am afraid to make a mistake since I only want to hear how good I am & not you suck mom. Now slowly getting that confidence that any decisions made in life is good thing, either it will boost your confidence for doing things correctly first time or teach you valuable lesson in life. We all have to learn from our mistakes & grow from it. Sometimes things that scare us most are good teaching tools for us.
I just had a few days with my daughter and family, it was nice to catch up with the grandkids as I hadn't seen them since May. My grandson was busy studying as he starts his exams on Thursday. These are the last of his Year Twelve exams and give him his final score important for future employment and access to University entry. He is very focussed but I could see an element of panic which is quite common at this time. My grandaughter is still three years away from that stressful time. She is a good all round student and as yet unworried about the future.
Shirley and I went to Gloucester about two hours away to my girlfriend's funeral on Monday. I thought I would need support as this is the woman I had known since I was seven. Jean and I went through school till our third year of high school together and had always kept in contact. She will be missed by many as she was an art teacher, a singer, very active in her community and recognised as an artist Australia wide. I know she is irreplaceable in my life. We had many friends in common so it was good to catch up with some of them. But I will always be conscious of her absence in my life.
I am busy with rosters, they rule my life from now to Christmas. In Australia with Christmas, end-of-year activities and of course the coming of summer with school holidays starting in December. Our days fill with beach going and picnics etc so we are BUSY. I don't think the beach will be a big feature for me but when the kids are here I do take them so take advantage of living on one of the best stretches of coast in Australia. The Christmas raffle alone is two days a week out of my life for six weeks.
The Royals are here, Prince Harry and the Duchess of Sussex, so Royal fever is gripping the media. They are due to land shortly in an inland city called Dubbo and the population has doubled there. Good timing as they have had rain there so the signs of the drought are overcovered by fresh green grass and they will see it at it's best. This is the fifth Royal visit Dubbo city has enjoyed so it is the envy of many. It is a boost to any little city to host a Royal visit.
We are having a Fashion Parade and High Tea at the end of the month at church and I might purchase a Spring garment as my wardrobe contents is mostly old and tired. It is many years since I was a trend setter. But it does a girl good to have something fresh and new to wear. Call out to caregivers... remember to look after yourself and from time to time to treat yourself to something special like a pamper day or a new outfit. All caregiving is hard and you need to look after yourself and keep your sense of self. I am only really seeing that in perspective now.
And so I am enjoying slightly warmer days and longer days as we are now on Daylight Saving time. Nice to have a chance to do some gardening that results in flowers brightening the back yard. There seems to be a time for a relax after a long day, this is when I really miss Ray as we used to review the day together. Ah well life must go on.
I am with a roommate like my twin.
We watch movies together , talk during a thunder storm the other night, and talk about how I got diagnosed with stroke pain.
I see her problems that are similar to mine,similar to CPS. But she calls it neuropathy. She is not diabetic. I asked how did you get neuropathy and she said after her stroke, but she never heard of stroke pain.
Things have been a little different lately for all 3 of us here (my dad, my step mom, and me). Some good news is that my dad has finished his course of radiation and chemotherapy. It is now a waiting game...probably another 3 weeks until he has the all important PET scan to see if it did it's job. My dad worries...this waiting is hard for him. He tries to put a mask on but it falls off at times...he gets grumpy, angry about waiting, impatient, and well down right mean at times.
My stepmom had rotator cuff surgery about a week and a half ago so I have been caretaker to her a lot...especially the few days after. I think it was a lot more painful than she anticipated. Thankfully she is improving and feeling better. My dad really doesn't help in that way...so I do what I can. I felt bad when I had to sit down with her and say "I am going to do my best, but sometimes (and I can't predict those times) I may be unable to be there 100% because my mind, body is really affected by some things and I have to rest. This was after she gave me a list of what was expected of me she had written before her surgery...she gave it to me the 2nd day after. I explained that she needed a back up maybe to call on those days. She said she understood. For the first 36 hours she was in a lot of pain and I had her call my phone when she needed something and I rested in between. Well, let's just say I think I might have had 8 hours of sleep during the whole of those three days. So the really bad fatigue began to set in. I can't help it. I needed sleep and was extra forgetful (ok that is not good). I had to go my PCP twice. Once because I was having severe pain under my left lower ribs and after painful exam was sent to a CT scan. 😬 I'm full of poop (I know tmi) my Dr. says to drink 1/2 bottle of magnesium citrate. 😫 OMG this stuff kills me. So I went home and took Miralax every day until I couldn't stand the pain anymore and drank my dose this morning. I will have to let you know later if I survive lol. Second time was like Friday of last week. I began to have this burning really sensitive skin feeling in my hip, left bum, sorta the left side of my tummy, then down my left thigh and through my left knee, down the side/front of my shin and then to the top of my left foot. It felt so achy and burning. This time my Dr. did a few tests on my legs and me lifting them and then pressing certain areas. He concluded that it is coming from my back. I do have a bulging disc around the L4-L5 area (bulging centrally toward my spine). I usually have an acute occurrence of pain every so often if I sneeze or bend over and a trip to the ER pain med and muscle relaxers. After about 3-4 days it's gone again. However, this came on slow (about 2-3 days before I decided I had to make an appointment). He wants to try Mobic (prescription NSAID). After talking with him about my concerns of my Neurologist saying do not take NSAIDS it may increase chances of another stroke...he explained he was only going to prescribe it for a short time maybe 2 weeks and studies say long term use is what you should stay away from. 😕 So there you go...today my butt, hip, back, and thigh hate life and are yucky. My tummy hurts because of the mobic (I have GERD) and it is also angrily growling and I am running to the bathroom. 🤒 On top of that as I am resting in bed my dad and stepmom are conversing about how lazy I am and I won't do anything. 😫 Is it bad that I don't give a crap? Oh and don't let me leave out that Mon-Fri I watched my sister's 2 girls during the day while she was at work. And yes in between taking care of them, my stepmom, and cleaning what I could I lay on my bed because I have no seat...just call me lazy and selfish that's the usual. Oh let me stop before I start. This is becoming another session of "Let it go! Let it go!!!" sing with me! Oh yeah, I got my flu vaccine and pneumonia vaccine (1ST time)..oww to the red raised hot circle around the shot site (pneumonia vaccine) and to my aching joints and bones! I need some comfort food...
chicken and dumplings or chicken noodle soup. Wish me luck for the day lol. Thanks for listening.
This is our book. I read it to both my kids,chanted those lines as long as I remember,meant them with every fiber and will always.
I recall when the kids became the adults caretaking their mother. It seems impossible the anger bitterness hurt that festered to a head.
Once my daughter's pediatrician when she was a teen gave her acne med saying our closeness was evident so she trusted My daughter would confide problems that arose.
Well we had typical stuff. My son pulled away to grown into a man. I respected his decisions. I am proud of him. He hid when his marriage failed but I cried for him.
Honestly we were so close as a family.
Then then then
None of that matters. Forgiveness matters. I wish the kids were close again but he will not talk to his sister so she blames me and no one talks now,years lost. My son said well you can watch grandson grow from afar, I can send you a picture I found online.
I texted the truth to my son. My jealous daughter said I took away her brother so she withheld the baby so I would feel like she did. She was angry that son and I went on roadtrip, it was xmas,she just gave birth,could not go,cmon......
Now we are torn apart
Like all those jealous of our closeness before...let them rejoice, we are strangers now.
I am sad I not hear from my son
He not text and say he understands the misunderstanding on my text or explain his emotional outburst I was not expecting. I hurt and miss him dreadfully.
Is he so mad he will cut off paying for my cell phone which not only gives me netflix but also enables me to schedule my medical appointments and transportation. Our phone jacks in room do not work and and I would need to use phone at nurses station. I appreciate he says to me that it is his turn. How sweet. But my children do not owe me. They gave me a gift of love.
My days are like the poem thing tomorrow and tomorrpow and tomorrow and tomorrow.....they blend in, some goodness is my hobby. I just got new books,pencils,Hooray. I have care. I have had pain everyday for 4 years. 1 year was at home, 3.5 here. I have survived and I recall lots of help I gave after my stroke as well as what I took from those who loved me. Yes I feel alone and I would never trade places, would never wish this on my worst nor best friend,I had a beautiful life I was blessed, but yes young I lost my life freedom and I call home this snf which will soon have new administration.
I am happy today. I missed support group for stroke,tbi,bcause it hurts to walk. I did not want to shower, get ready. Pain is exhausting. I stayed in bed this morning.
So while I was driving at night, around 11:30p leaving work last night, I saw flashing red and blue lights in my rear view window. As always I was very nervous because of having a hard time seeing at night. So the black and white had EXTREMELY bright spotlight shining in my side mirror that pointed directly in my eyes. I already had a head ache and super tired. I just worked 3-11 after working all weekend. The officer, or first officer of 4, yikes four, knocked on my driver side window and asked if I was drinking or doing illegal drugs. ( side note:: my father informed me that the area I work in and near is known for many arrests of DUI or DWI) I put my license on my lap with my other documentation and of course when they walked to my window I dropped it and couldn't find it. I eventually found it between my seat, while he was standing there. I screamed " I found it" and didn't realize he was standing next to me. I told him I had a stroke and due to SSDI not paying my bills, I had to go back to work and showed him my work ID. When they walked back to their car, I'm assuming when they ran my ID, it said I was a registered handicap driver and must have my heath reason .. I think? But ultimately, and thankfully, he walked back to me and issued a warning. I said I really wanted to go home and sleep.
My fear always has been I would be asked to do a sobriety road test and I know I would fail.. That was close enough to my nightmare.
I was visited by Health Department regsrding a complaint I made againt a nurse for being an abusive bully insulting me and interfering with me getting to urgent care...where they called an ambulance to escort me to the ER and then I was admitted to the hospital.....so now that nurse still cares for me but cannot contact me so someone else brings my meds....... This was a complaint I made last year....so the HD said I got the name wrong...oops well lets recall who told me a wrong name around here.....
So the HD said it cannot be proven. I said I know. HD said well still complain because then if many complain......
OH I just zoned to my happy you cannot follow me here place.
........no one can prove what another does........
Then I admitted I took a picture when the 2 nurses were standing hands on hips in front of me....cannot prove...but to my memory issues it reminds me it was real not a dream...and I have hospital discharge sheet.
But who can prove another's bad behavior....
Oh interviewing others?
Some code of silence.
So HD asked if I was afraid. I said well this nurse takes care of me but not in my room. She parks her cart outside my door because that is where plug is.......I just do not like the nurses who are on some power trip......that are lvn anyway. But I deal..... it is history
My real problem
Is that I got a text from my son who says for the last 4 years I complain I am alone and ........ok I do not recall exactly but the gist is I am wrong,selfish...and my inner voice chimed in...undeserving, ungrateful....you get the train here.
I was stunned. His opinion of me is priceless. I want his love and respect, yes still. How dare he address his mother this way. And I thought all was well.
Ok he never visits and it has been months since he took me on outing...which was a 2 hr limit store excursion. Yes he has busy life. I want him to use his off time for his social life, not mine, of course.
But I do expect him to be there.for fun times visit,talk,eat. I am grateful for time he makes for me.
Where did this come from?
I think it comes from his friend and that mom who hate caring for grandma.
So I am that now?
Someone warehoused to die?
And I have the nerve to want to be taken into live,society.
Well, lets see..I have never been invited out with any of his friends for some occasion, just like in real life,ones mom is not included. So how do I interfere?I do not.
I do not expect much. I text. But most of the time I am misunderstood....that I have said something bad against him or hurtful. But he never calls. He prefers text. Great. But somehow I say one thing that becomes a disaster.
He loves me. I hurt him. This situation. He helped, but he young, not expected to be able to do more.
But then I read that and think wait, he is 29 now and looking back, I had 2 kids,took care of my mom......
Maybe root is something else.
Families have bitter jealousys I do not have time for.
NEWSFLASH here, I have CPS. For the last 4 years. While I have been whining, needing reassurance I am not alone when I really actually am alone, I have had daily Pain,hourly Pain and constant unrelentless pain that actually honestly and in 4 dimensions of reality hurts.
I have endured losses. I do not need that laundry list again.
So if I am a pain in the ass, excuse me but I am not some sweet granny that grew old into an inconvenience and wants a call.
No, am I needy on my only son?
Well I am in a SNF for life so how much more can I disappear?
Well MY son said to put my phone away until I take a pain pill.
To me that translation is Hurry up and die already you old bore.
Oh and he is upset, still upset I may add, from a statement I made when I got home from hospital,had no filter or emotional control, which no one was expecting and I said something like I wish I had not had them.
Now let me tell you about my struggle with infertility,miscarriages,and 2 high risk, one even told to abort but I did Not.
SO everyone knew my children were wanted and my ex lost parental rights, so I devoted my life to both....and that could fill a book...
....yes one sentence kills a relationship
I have apologized, and we traveled around we spent time....but now I see oh sure he went along,but nothing was forgiven or understood. Did he read ?
I feel heartsick.
I feel all that but then I feel I survive for myself.
No not really
It is always about my kids.
I go on dreaming for it, that happy ending.
I am not going to the support group meeting tomorrow. I hurt. I should go,want to,but my leg burns,hurts to stand,buckles in pain.
But good news.
There is always one piece somewhere. My electrode trial was approved so I will schedule that. I am ready.
And I have new coloring books from my fav author. Plus new set of good pencils. MY HAPPY BIRTHDAY! I finally got what I never got after I ordered this with activies director. She gave substitutes. Ok nice.But...
How did you ask?
Well I did a survey and earned $$!
I am doin another next week for Amazon gift card.
In the meantime I will wait for pain thing to be done.
And being selfish feels good, i finally spent money on myself.
I am woman with still work in progress. I keep on learning, forgetting & relearning my lessons. Some lessons my life experiences has taught me are hardest to learn & I still struggle with those from time to time. Though I am blessed in a way, that since I gravitate towards those kind of people who can share their spiritual wisdom & get me on right path any time I struggle,.I have been surrounded by amazing set of people who put me back on right path. So that brings amazing joy in my life. Anyway these Sunday some of us met & discussing these big questions life throws at us like why I am here & what's purpose of my life. I was telling every one that how when good things happen in your life, we are likely to take all credit for it, but as soon as something goes wrong in life then you start questioning God & where is he, why did he allowed something so bad happen in my life. One of the argument was made, you need to put God first in your life, in good times & in bad times, he gets all credit. Hubby said wonderful thing while we were walking home, he was like why do we have to label any event as good or bad, events are just events in our life, we got to deal with them as they come along in our life. two very thought provoking statements which straightens me & my ego out.
I know I keep on saying this, but realizing something amazing about my hubby after 27 years of marriage is funny. That shows you how I am so different in understanding different love languages of people. ok back to my life. I recently realized something wonderful hubby used to do when I had just come in this country out of love, duty or fear for my safety, so I never paid attention to it & took it for granted. Anyhow here is story, after our marriage when I first came to this country, we used to live in New York city. It was 1990s, NYC was not as safe is as it is today. Anyhow in those times there were no cell phones to communicate, internet was not very ubiquitous yet. I used to take graduate level courses in university in new Jersey & we did not have car so I used to take public transportation so none of us had any control over its reaching time schedule. but on my class days he would always be there waiting on subway station to take me home, since walk home was not very safe in the evening. In my own frustration of spending few hours in public transportation to reach home, I don't ever remember wondering how long did he have to wait for me. Though recently I realized it while talking with old friends about old struggling days, & light-bulb went on, that hey asha do you realize how lucky I am to be married to such a steadfast, dependable guy. So had to share here, so I never forget
Sometimes I take the hard decisions and accompany someone on the journey to death. It is something that I was trained to do as part of my Chaplaincy training. This time it was more difficult though as it was someone I knew well, the man I went out with for a while. Lyn and I broke up in November 2016 and four months later started a friendship that lasted till last Thursday when he died. He had twelve weeks in hospital and it was hard to see him slowly deteriorate and probably during the last two weeks the quality of life was no longer there.
I will really miss him, he was a great conversationalist and we talked for hours over cups of tea and across cafe tables. Once I accepted that friendship was all he could manage because of his ill health we became the best of friends and I am going to miss him a lot. The funeral is on Friday. I have met all but one of his children and step children so will feel comfortable being there. I do go to a lot of funerals anyway but the closer I am to the person the harder it is for me to not be an emotional mess.
Apart from that I have been doing some gardening, preparing for summer by doing a little Spring cleaning. This week I have Trevor and Alice visiting so we have been out most days. Alice loves going to the beach
even though the weather is still cool and the ocean temperature cold she has been in doing her version of swimming. Today we went to an area with a children's wading pool and she loved it, she palled up with a girl her own age and they ran around together, a great way to burn energy and keep warm.
Yesterday we spent the day with Pam and her three children and it was great to seen the four of them playing together. The boys play games Alice can join in and understand with her being so much younger they have to be gentle with her. I think being with cousins is a great thing for Alice. Unfortunately with major exams ahead for Christopher and much to do Shirley and family won't be coming down before Trev and Alice go home. A pity as she enjoys their company too. I may see them next week.
The country is still very dry, Trev said kangaroos, emus, goats and cattle are competing for what little grass there is and carcasses litter the roads. Drought is heartbreaking for all our country farmers and my Lions Club among many others is collecting money and goods to send to the country to support farmers and their families. It is probably too little, too late but we need to show them we care about what is happening to them. After all we really do rely on the farmers for the food we eat and some of the materials for the clothes we wear etc.
The year is flying by already people are asking about my plans for Christmas. I never know what I am doing this far ahead. Shirley is not moving for at least another year so that is good. I will probably spend Christmas with her family. There is a lot to get through before then. I hesitate to make plans, in the past so many things have gone wrong that for me planning too far ahead seems crazy. Just have to wait and see what happens.
I play cards with a 96 yr old WWII vet who exercised women on base. She won a silver medal in diving at olympics. The local papers toot her praise. She is athlete and scholar with phD. She now is hard of hearing and losing sight but she is sharp. She plays cards always. Before meals....she plays Solitaire or plays Rummy with others.
She counts cards and knows when one is missing at end od play. She could catch a cheater.
She taught me to play double solitaire.
When we see eachother we both smile. And go play. For hours. Until mealtime.
I talk about her often.
She is alone.Her husband passed. No children. But friends come visiting. Bring fruit or desserts.
Decks of cards go missing. For years i am here. Samne thing..Where is her cards.
She comes to my room wanting new cards. My purple set is worn out old but goood. I WONDER. And I ask activities to give her cards. Sometimes yes others they say no cannot keep giving herr cards. I get it.
So my friend and son give me cards for her. I even gave her a card box. Gone.
Then a drawstring bag with 2 new packs. Her name everywhere. GONE NOW. in a month.
You should see her face. A lost soul. So sad. Misery. And she comes to my room. I give her new cards. One or 2 packs. Ok some get worn out. She tells me. I get it.
But the lost ones. We never see others using cards. No one else here is.
But i say ok I feed the thieves and then she happy she gets to play.
My son bought another box of cards again at Costco. 12 packs. Ok one year. New cards every month.
I showed her a photo and said do not worry. I have cards for us. Her happy smile said it all. Then she pointed at her opponet. Back to the game.
She tells me when the deck was missing 2 of hearts. I said save the pack for scraps. Here is new box of cards. I understand. ALL cards count.
Who is stealing cards here. Ok she may toss an old pack. But not all new things and cards. No one cares or knows otr sees evidence
Ok seriously the police went to her room. Her friend reported that her clothes and stuff went missing. She always wears a watch that winds. They replaced it a few times. Frustrated at theft here and lack
I lock my stuff. Carry tot bags. Laugh but I not lose much. Some yes. But all replaceable
My son promises you will always have cards to play with.
This time i will keep receipt and write it on a possessions intake. I will give them away if needed but if all gone then someone will replace it.
Ok social worker say if you give or loan to her then no not replace the box of cards. I furious. Injustice. But aI give her a new box. My son says cards are cheap.he will buy more.
So a couple of times I play each week as I feel good.
My son bought a new box of 12.he sent a text photo.I showed it around.
I never see otherds with cards
Buy my son is a saint. When i see him he will give to me. I have 1 pack left of last box. Red and blue are for her. I assure her. Never worry. You will not suffer nor be without. I pray for the thieves.
Even police reports do not protect us.
Ok my cell phone is safe but not our cards.
But she is happy playing cards.
I get anggry.
So I help.
111I told my driving company do not send me a lift because I have vertigo. I guess when I topple off when I get dizzy they will take me seriously.
I fall asleep. Whenever. In public. While eating. So after passing out in my bathroom they need to watch over me.
They are saying it is the drugs making me sleepy. Plus I need more rest. SO I climb in bed and nap.
But then I am lazy right? Cmon.
I need my pain med on time.
Yes I am on SO much.
I go a bit batty calling out in pain.
They need to wake me. It hurts.
So wake me so it not hurt later. I need that.
It not make sense.
They not take it seriously.
Like ok just behave. Be nice. Be good.
I cry. I hurt.
Over and over. Same thing.
I came here this morning to share something happening in front of me...it affects my stepmom and her ex-husband's family who she has remained close to. Life happens sometimes in a way so beyond what we can control. My stepmom's ex brother-in-law has been ill the past two months and having serious heart issues. Eventually he needed heart surgery and when he was in the middle of it a clot formed in the circulation machine that traveled to his brain and caused a massive stroke. 😔 It kills me knowing that sometimes when we are doing things to get better that a stroke can throw itself in the mix. He was given low percentage of recovery and he survived. It was just a month ago. As a survivor I see and feel what another is going through...it's palpable. Not just from one side but I see both...survivor and caretaker. Not perfectly but well enough. He is a shell of his former self, incontinent, immobile, has CPS...even though he is there...inside...unable to communicate to those he loves. Here is a small amount of family history for this gentleman...he has 2 sisters both of which have had cancer and one is still fighting, he has a brother with dementia, and his other brother passed several years ago. They are probably all in their 70's...age is sometimes not kind. The one sister who has already beat cancer has been his caretaker but she just can't do all that he needs. She lives in Florida but has been here with her family several months during several difficult health issues from all around. I know she is exhausted in so many ways. She has told my stepmom that she is responsible but she has also told her how bad she just wants to go home. It's her home. I know that both can only do what they can do and as much as we feel responsible it can't be everything. The sister is impatient, accusing medical staff of not working on what he really needs like: PT for his legs so he can become mobile again instead of PT for fine motor abilities which he lost. I know she doesn't understand but she told my stepmom that they need to work on the things that will get him better and she can go home. I understand...breaks my heart but I do. During all of this, her brother sitting, laying, quiet, agitated, sometimes incoherent but aware. Having to watch the world move around him like he is invisible. He has CPS and is being treated temporarily with pain meds for now but his sister is adamant that they not give him this kind of med I mean he had a stroke he didn't break his leg. She doesn't know. He is still receiving pain med but he is still suffering constantly. Why is he crying all the time? Why is he agitated? Why can't you fix this? She doesn't know. God bless the therapists trying to help him get better. They don't have it easy in many many ways. The sad truth is that no one does. All I can do is pray for all of them...say some positive words that I hope reach the family and the therapists. I am mad at STROKE!!! Just plain angry...You stupid, unforgiving, unmercifle stroke!!! You are a monster!!! I hope so much that this family and those helping to fight kick your butt!!! I can't say anything else...except please take the time to research and see it for what it is. Learn patience because stroke will take and take and take. Educate others. Forgive those who don't see...Forgive those that do...bless those that fight for both.
Has anyone said to you, "It's all about you.". I have had this statement said to me numerous times. Today I have been thinking...Do I make others feel this way? Am I egocentric? Do I lack empathy or maybe sympathy? You get the picture I'm sure. There are things I have noticed about myself since the stroke: I talk a lot about myself and the stroke or stroke effects left over. I get on my own nerves sometimes. There are certain things that I feel indifferent about. My stepmom hoards (cleanly but hoards). It's caused her issues in the recent past when her mother passed. She hasn't been able to let go of her things whether they are useful or not. So much so that she pays for 3 storage units to house all the items because her house is full. (Remember I live with my dad and stepmom for now due to financial reasons.) She also was diagnosed with hyperparathyroidism about a year and a half ago. This caused her to lose calcium and vitamin D from her bones and caused several hairline fractures about her lower legs, ankles, and foot area. So she has had pain, surgery to remove three of her 4 hyperparathyroid glands and the last year to recover and build her calcium and vitamin D back up. The problems I see is that she keeps anything and everything and can't let it go besides true filthy trash. Like she rinses and reuses Ziploc bags, has an insurmountable amount of "stuff" that is buried on top of each other that is never used, has like 10 China cabinets full of glassware, trinkets, ceramic anything, things that she had "collected" through the years, all the curtains, sheets, clothing, etc. that she has had over the past 35+ years and all that anyone will give her, out of date beauty and Avon products that she refuses to get rid of and says they are ok and she plans on selling them, honestly the whole house is a trip hazard for me and wrecks havoc on my overstimulation issues, the downstairs is so full that there is a walking trail from room to room. Anyway, I can't or won't help her because I get severe anxiety and she micro manages every move I make. She got upset with me for throwing away a bar of Phels Naptha soap because it was green and cracked and just gross. It was probably 20 years old. You can still but it. She said she could have sold it. I am writing a book here, sorry. She also moans all the time like every 10-20 seconds, "uh, uh, mm, oh, oh, ooh, ooh, oh my gosh, mm, etc." over and over constantly. Especially when someone comes into the room she is in. The doctors have told her in the past to stay off her feet, be careful and don't fall, no lifting, and she does it all. She has been on opioid pain killers for over a year. She's had 7-8 MRI's. Refuses to do what her doctors have said. Actually her levels are back to normal. No matter what else, I can't seem to find I guess sympathy for her. I have a tendency to get agitated with her and get on a soapbox and fuss. I have noticed recently that I avoid noticing her grunts and groans, self mumbling, negative self talk, just everything. Granted I still talk about my stroke effects, sometimes using them as examples of how to "accomplish" things. I am getting way overboard in my explanation. I also notice that I speak about my stroke effects to many others I am close to all the time. I have to make myself stop. I don't really know what I'm trying to say...I'm sorta lost right now...my points are gone.😕 I'll just end with do any of you experience moments of egocentric behavior? lack of empathy? lack of sympathy? a more than what I Feel is normal preoccupation with stroke and self? Does anyone else feel like this toward you? Do I think its all about me? Confused...