A blog is a personal journal of your daily life as a stroke survivor or stroke caregiver. Surprisingly, countless members have called it therapeautic to write down their thoughts and to vent their frustrations. You can make it private, just for your eyes or public and share your personal thoughts with your friends. Why not try it, create your blog and start writing and see if it helps you.
I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I was a little bit shocked by the news but taking into consideration I have had the melanoma op, the lymph node dissection etc I am not really a good candidate for another operation, especially brain surgery.
The specialist was fairly brutal because I think he wanted me to know if I wanted an operation it had to be after I got a clearance from the melanoma specialist and that would take time. He said he knew I had a long wait ahead of me but not to worry. Not to worry!!! So back to basics, no stress, no strenuous exercise, no * blush, sounds like no fun at all. So what can I do? As usual make some decisions, live a quiet life, let the future take care of itself, one day at a time. Hell's bells, what else is new?
So I have a plan. I have to just go on the way I always have, going about my usual routine one day at a time. Whenever I start to worry I will visualise that little bubble about the same size as the tiny diamond on my engagement ring. I will visualise a tiny angel sitting alongside the aneurysm, with her thumb firmly on top of it holding it in place. I know one day it may be that she will take her thumb off and the pressure will build up and life as I know is it will be no more. But It will happen to us all one day, in one form or another.
I went to Dissection Clinic down in Sydney today and there have been no changes in the past three months to the Lymphoedema, which is good news. In the interview I told her I had regained my confidence in walking down stairs which had taken a year to do and had recently started yoga again. She seemed pleased with the progress. No more interviews in any of the Sydney specialists rooms until next February. Hurray! I have survived twelve months since the melanoma was removed and six months since the operation to remove the lymph nodes. I have a lot to be thankful for.
My daughter took me to both appointments, I was so glad she had the time. We stopped for lunch today before we left Sydney and although it was expensive it was a happy time and one we rarely enjoy together. She also got the news today that the position she holds as Captain of the Cardiff Corps has been extended for another twelve months which is good news for me. If she had been moved it might have been a lot further away. Her husband's appointment has also been extended. Though he will now have a wider area to cover, which means a lot more time on the road. But she said he can cope with that.
On a less happy note my special friend who has the leukemia has now been in hospital for eight weeks and he now seems to be getting much weaker. I have been a regular visitor and it is painful to see the deterioration. With all the people I have ministered to in hospital you would think I would get used to seeing that happen but I never do. I am always an optimist, thinking with the right treatment, an adjustment to their medication etc they will be fine. But that is not always the case. So maybe there is more bad news to come.
There are signs of Spring now, birds building nests, green grass after a little rain, even some blossoms on the prunus trees in the parks we passed today. Hopefully the nights will warm up and we can start packing away the winter clothes. I have no plans, the future is a blank canvas. Don't think there is much fun and excitement ahead but who can tell? If I wake up breathing and moderately energetic I will endeavour to have a good day.
I sat on the table with a pair of leggings on and a thin robe undone clutched around me like a shield warding off the words no woman or man wants to hear.
And No person with CPS can tolerate.
The radiologist wants me to schedule a biopsy ASAP for 2 suspicious spots in my L breast.
I said BUT I am going to have an electrode implanted.
Then the following words floated in the air hovering over me making sense no xsense then just being:
"Oh you people who don't want to live another day in pain are hard to convince early detection saves lives."
Wait what?So I almost cancelled this appointment for mammogram redo plus ultrasound because imagine they removed the wires connected to a battery to a computer program HELPING me be comfortable for the first time in nearly 5 years. Who else knows what pain for 5 years feels like or lets word it this way who else did not want to live another day because of pain? We are a real group of human beings.
We who do not want to face another day....
How about this:
"We who face each day in pain.Despite pain."
And hear this from the mountain top!:
I have had a mammogram EVERY year since turning 40. Including going to a cancer treatment center at medical center at university hospital at the best machines. Every year even since my stroke.
I have vestibular problems. I find standing and balancing difficult during the test. I ask them to turn off the 2 tv's with imax relaxing movies that make me wanna puke and fall over. I find that squeeze extra horrible on my numbish yet not painless right stroke side. I do it for early detection. I watched family members care too late.
By the way. I also took my blood pressure medication yet here is stroke at my side every day with pain every day.
So last year I found a necklace getting a mammo. This year I found suspicios probably not cysts in 2 places.
I want to cut off my breast. It feels contaminated now. Even before the verdict.
But the conversation was that pain was not an important issue. She said it with a smirk. Ok please let us be honest here. How many stroke survivors have not been able to live with the pain? Suicide is not something people actually talk about. So please excuse me if I feel strong and confident that I have continued to live the days given days required in the pain required. That is not scoffable. I did not allow her to insult me belittle my pain experience.
I said I wanted 2nd opinion. She showed it to department head.
Also they insert a tag on the thing that proves to be beneign so in future no one will biopsy it.great.efficient.
Yep unfair. All my head screams. This pain is punishment enough.
Will I be joining another support group?Hey is there one for those extra achievers with multiple problems.
I realize I must take care of both.
Can I fight cancer while in pain?
Can I get the biopsy??
Alright. Indulge my mental wanderings.
The wires were removed. The burn returned. All that pain. I long for meds before due time. No one sees how it hurts unless I call out but then they scold me.be patient. Wait your turn. Be stronger I tell myself.
To go in public I must shower.
I did 3 weeks trial.3 weeks sponge baths.3 weeks washing hair in the sink.
So I showered.sitting. But every pain felt. Oh I went in right after pill so covered. I was wheeled over to the showers.
Going to my bathroom hurts
Walking the halls hurts
Pain surrounds me.
When it hurts I hold my breath and then my chest hurts and they tell me Breathe!
Getting out hurts.
So I do not schedule.
I wait for electrode surgery day.
My day is this...moving and standing very little. Coloring and music to help me endure it. I not visiting. I hurt.I not having Xmas but I celebrate by prayer and communion. Alive. Blessed to live. But there is a life with comfort.somewhere.
I cuddle with my sherpa xmas blanket I snuggled with in the car going to the old xmas lights that I took the kids to.
On the whole I think I cope with being a widow pretty well. But as soon as the warmer nights start we have noises outside. As a widow and even before when Ray was living here still but was unable to get quickly out of bed I am the one who goes off to investigate. It may be possums on the roof, dogs overturning the bins out on the road or a group of noisy teens coming home from a party, rarely is it something life threatening. Sometimes I just don't see the cause and I might go back to bed and worry for a while but usually I am satisfied. Tonight there is a wind so all kinds of rattles and bangs but all ones I know the origins of so I am okay.
I always say we all plan for retirement but not for old age and I think that aplies to me now. I have got a lot slower since the last operation and I know that while I can still manage housework, shopping and the ordinary tasks of life I cannot do maintenance so in the New Year need to find a way to do the jobs I can't accomplish and that means find some tradesmen to do them. This is going to be a considerable expense but as I don't go on holidays much now I can use that money.
We also don't plan for widowhood so I am now putting some thought into my future again. There are two main choices, staying in my own home or some sort of retirement complex. I think I will maybe consider downsizing to a smaller place too. It seems unlikely now that's one of my children will move closer so I am probably not going to have help in this. It is not that they don't love me but it doesn't occur to them that I need help. And I do find things more difficult now since the leg operation. Every job that involves bending and lifting takes a bit longer than it used to.
And we don't take our future needs into consideration. I am thinking of our need for help and support. Through pastoral care work I deal with the elderly a lot and I can often now see my own needs in the ones I am helping. The need for companionship is high on the agenda for widows. It is easier during the day as public transport, taxis and lifts from friends help if you no longer drive but at night and at weekends that is not as available so there is a difficulty in meeting up with friends.
Technically speaking the family should fill the gaps but in fact few have family living close by. I hear that from the little lady I pick up for church and others in my craft group so I am aware of how it will be for me if I can no longer drive. I wondered if I should express these thoughts here or if I should write them in my widow blog but I think a lot of people on here also struggle with living alone as I do or wonder how they will cope if it ever becomes their life. For those of you who have someone living with you, cherish that situation. Alone means some extra freedom but too much time alone is stressful, particularly on those nights when the wind is up and I become super aware of noises outside.
The good news is that I do have people who love me. They might not be right here but they exist. An old friend in her 90s rang me early this morning to tell me she does. She had received a Christmas card from me and rather than try to write a letter had rung me instead. I know there are people who love me, family and good friends, I am not discounting that. But it isn't always in the forefront of my mind. To my mind I am very much alone. My girlfriend who died recently was one of the people who I could ring on a night like this and it is one of the reasons I will miss her. I miss a lot of people who have been good friends in my past years. It is not the same without them.
Sometimes I think the Christmas season is hard on us as people who have cared for others. I know I never really thought about the impact before I was a widow. As a caregiver I was simply too busy. Now I am on my own I have too much time to think. There is a car alarm going off somewhere in the neighborhood, another party up the road, the sound of music somewhere further away. Somehow that accentuates the aloneness I feel. I probably need to put on some music of my own and block out the noises outside.
*First let me put a disclaimer here. I am going to talk about faith (religion if I may) as it applies to me. I never want to make another feel that I am weighing their faith or lack of in any way than my own. I believe in acceptance and only strength in whatever faith you may practice. I love you just the same. If this will cause a negative feeling in someone please feel free to click out now. I would never want that.
I made a blog post yesterday that stated God had given me a gift. Just so you know...I grew up protestant and a Christian. My first church was Presbyterian and later in my teens my family began going to Baptist church. As an adult I myself have not continued this childhood tradition of meeting every Sunday for church. I have my own spirituality and still identify myself as Christian. My extended family on my father's side were never church going and for most of them this is still true. On my mom's side, however, faith, Christianity, church, etc. have always been pretty important. My mom is now married to my wonderful step dad who is a ordained minister (he no longer practices but does perform marriage service for our family if desired.). They are a praying, believing, faithful couple. Again, I accept everyone and their beliefs for who/what they are. I will always foster friendship no matter. My point is I'm not perfect and expect that from no one else...I accept you period. I am concerned that i may have said something that feels hurtful to another survivor. If so please accept my apology. You see this gift in my heart is because I have a wonderful supporting family who have stood by my side through 3 years of fighting for disability. They have prayed so many times for me and for positive help to come my way. I have been unable to work, removed my life savings to survive after stroke, have literally lost everything I possessed, live with my father and step mom, my sister has let me use her "extra" car since I moved to my dad's and pays the insurance, my mom pays for my medication, all of my belongings (nothing worth money really, just the small things I still owned when I moved into my dad's are in a storage unit that my mom and step dad pay. Heck, my mom pays for my gas to get to the grocery, to Dr. appointments or any other thing I need to drive to. If not then she, my step dad, my stepmom, and my sister take me. I am beyond thankful and I feel unbelievably blessed. I know I am. My stroke wasn't a gift. It was just what happened to me one day back in July 2015. It has and is the hardest thing I have had to endure health wise by a long shot. No gift there. I thankfully have acknowledged that out of all the bad I have taken some things away and have learned others. These things do not help my deficits but they have helped me to accept me today. I also feel blessed to have this...I know many have not received this insight themselves (hopefully yet 🙂). Still, no matter, I only wish you the very best. If anything stroke has a consequence that many feel. It can make you question, yourself, your beliefs, your faith, your body, your doctor, your abilities...simply your life. It can trigger grieving for who we once knew ourselves to be. It can make us angry...at many things. It can push us to lose hope even for a little while (or more). We may forget what our dreams were or feel they are unreachable. It can effect every aspect of our lives. We are each unique in person, beliefs, circumstances, history, our strokes, how we cope...all dynamics. I can honestly say for myself that I haven't given up, I want my dreams even if they may be different than they were before, I can finally feel I can look forward, I can finally believe in myself and in my future whatever that holds. My gift of what I feel is a prayer heard and answered. I am beyond thankful. My stroke was not a gift but my faith has given me the strength to fight and hope. I hope your beliefs, faith, or whatever you have in your life lifts you. Thank you all for all your support the last couple of years. I couldn't have felt this way without it.
It's been close to 3 long years since I began my application for disability. I never wanted to apply. I never wanted to be in a situation where I was in need of such a thing. It's taken a long time to accept. So I have lived with my dad, depended on my mom, got transportation from my sister. I have been on the roller coaster of after stroke effects, dealing with my family's judgements about these and after seeing my Psychiatrist for over 3 years every other month hearing him say you won't be able to go back to work like before. That's a hard acknowledgement to swallow. But I decided I have to live. There has to be more. There has to be freedom even for me. My mom's family are very big believers in prayer. So they prayed...a lot. So did I. Saturday I went to Nashville to get away and celebrate my birthday a bit. I was ready to be home Saturday night. I got my mail and there were 2 letters from SSA. I took in a breath...I have opened these many times since it all started. Then there were the words...Fully Favorable. I have won my disability case!!!! The second letter is from SSI...I qualify and am going.g to a meeting tomorrow to see what that means. I still feel lost lol. Not sure of how to do this. But I am game! I know many prayers went up Saturday thanking God for hearing me and for an answer. I am beyond blessed, so thankful, and intend on making the best I can of this "thing". I feel like I should be celebrating...and I was Saturday. So much so I felt nauseous...little did I know in an hour I would be in the grip of a stomach virus. Feeling better today. Thought I would share with my second family. Hugs! 🤗
Since hubby's most of the family still back in India, we do go & visit India every two years. traveling with me is bit scary sometimes, we both have to be extra careful of me not stumble anywhere & fall on uneven terrain, which in India there are plenty when we go visit our home cities & our village where construction is always going on on roads. & not railings to hold anywhere except hand of my family member.hubby always had me in his death grip lol. This year I made plan in such a way that we took halt in dubai for 3 days before going to India, against hubby's desire. hubby is never interested in going to any saudi country as an american tourist. he always think world is so big why take chances. So Egypt, Russia, North korea is not going to feature in our travel plans any time soon. We had lot of fun in our travel. In Dubai we did most of our touristy points in our three days. We did desert safari which was riding on sand dunes in SUV. you get motion sickness going up & down on dunes & feeling OMG this vehicle is going to topple now, but thankfully due to skill of driver you come out laughing. We saw most beautiful mosque in abudhabhi where you have to wear burkha while visiting mosque. you realize this oil rich country has so much money to spend on mosque, & their palaces. We had major jetag confusion in dubai but no harm was done it was just funny, we thought it was next day early morning & went for breakfast & it turned out to be still evening, so it was dinner time, only drawback was I ended up taking shower two times & we packed up early lol. We both enjoyed Dubai then on our way to India, met our grandchild (my niece's son) for the first time & hubby's whole family. hubby hs big family he is youngest of 7 brothers & sister, so its always joy meeting every one. Usually there is always one or two new member to meet in his family. This time it turned out to be new family member in my side of the family. & no new member in his side of the family. hubby said jokingly that productivity has gone down in his side of the family this year lol. This year while traveling fortunately I did not fall anywhere like last time, though my sister-in-law & brother-in-law fell, luckily no one got majorly injured & it was just bruise to their ego. We are finally home & in our bed though it still takes time to orient myself which way I have to go for bathroom in the night.
Since my stroke I have changed tremendously. I was always the extrovert social butterfly. Easily talking to anyone, making friends easily, sometimes dramatic lol...I enjoyed expressing myself. Today I am not that person anymore. I'm skiddish, awkward, easily startled, get stuck in silent mode when spoken to or stutter, a loner, don't like noise or movement or lights or the dark or people. 😧 I do love when my kitty is around me. I enjoy talking on the phone sometimes. I manage to enjoy my local stroke group meetings with about 15-20 others. I occasionally go out to eat with my mom and step dad and usually with a small group after support meeting. I don't "hang out" though, visit others, "go out", only shop for what I need at smaller stores (no mall visiting). I don't really have "friends". I'm the epitome of anti-social. I stay in my bedroom with the door closed a lot (I live with my dad and stepmom while going through the disability process). I am often silent. My dad says I should get out, have some fun, meet new people. I told him I don't want to go out and be around people or noises. I like being alone. It's easier that way. But something happened lately. A man in my stroke support group sent me a pm on Facebook. We have exchanged pm's quite a few times since that day. He knows my sister and he knew my brother that passed earlier this year. He and I know many of the same people. He even asked my cousin (we both have her as a friend on Facebook) about me and she said I would be a great person to talk with. He is funny, handsome, had his stroke 5 years ago, goes to eat with us after our meetings, grew up in the exact same area in Nashville that I lived and worked in for 10 years. We have a lot in common. 😲 I am socially...weird, awkward, terrible at, clumsy, terrified. 😐 I say things that are goofy, in my opinion inappropriate (not in a bad way just bad timing). I told him last week that I was Facebook stalking him, laughed and then said not really I'm just looking at your pictures. 😫 Who says that? It's like I'm an immature 15 year old tripping over her words. He has not answered me since I sent a message on Friday. So my head makes up all these scenarios to worry about...he just talked to me in a pm...what scenarios 😬... he didn't ask me to go out. I'm freaking for no reason other than my brain making a mountain out of hill. I talk to myself saying Tracy he is just a nice person who talked to you...he's a friend...relax. 😭 This sucks!!! I feel like a dork or at least a social dork. 😟 I just needed to vent and practice my social skills lol. Thanks for listening.
Last weekend was the Women's weekend of the Stroke Support group WAGS, I think my 10th full weekend although I have sometimes
just gone to the Friday or Saturday night, depending on the circumstances. I remember one year I got my older son to look after Ray so just went from lunchtime Saturday until after the dinner. Of course the past six years I have gone as a widow. I shared with another younger widow this year as I did last year. She is only mid-fifties and still has children in her care as her husband died young. She enjoys the weekend as a break from her usual routine.
One of our members has compiled books of photos from each year back to 2005 the year before I joined. I really enjoyed looking through them and recognising some of the faces as old friends who can for various reasons no longer come. As usual it was a sad/happy time as we remembered those who are no longer with us, acknowledging also those who were foundation members. In every organization there are those who put in a lot of hard work to make events go well and WAGS is no exception. We are all grateful to the handful of organisers who make the weekend possible.
I enjoyed the company, the food, the entertainment, but as usual especially the dancing. Of course I would love to be able to dance the way I used to but found it impossible to be as balanced with the left leg musculature being so different now from the right. But I managed to dance for most of three hours so I was very proud of that achievement. And it was wonderful meeting up again with such wonderful, brave indomitable spirits, both caregivers and survivors. They are an inspiration to me.
Coming home is always a let down and I have been feeling that this week. I am busy enough, on the Lions Christmas raffle two mornings already but my trip to visit my daughter and family mid-week and go out to a Salvation Army lunch today was cancelled due to her schedule. It is a thank you to the officer's parents, and thank yous are rare. And then news of another death in the distant family added to my sadness. It does seem as if there has been a lot of deaths within my circle lately and I think that dims my usual brightness for a while. It is a reminder of our built in use by date when those younger than ourselves die.
Really now I have no-one to turn to when I am sad, I miss my good friend Lyn for that reason, we always included in our chats news about family members, happy and sad and I have no-one to do that with now. I think it is not likely that I will make another good friend like him. I really miss my girlfriend Jean, who died six weeks ago too. It was such a shock when she died. And without those friends from our formative years to share our memories with we are so much the poorer. I am really feeling that now.
But as we know life has to go on, Christmas get togethers are starting, bring a plate to this one, book in for that one. It is not only the busy season it is also the expensive season. I have the trip to Broken Hill to look forward to and other upcoming events but Christmas this year will be with just Shirley and family as Trevor and Steven and their families have other plans. Inevitably that will happen some years. But that is when I really miss Ray and that focussed family life we used to live.
5 years ago, today. My life. my world changed in the blink of an eye. With an aneurism (intra cranial hemorrhagic stroke,
a brain bleed) and mild stroke.
It took awhile but I joined the network. The connection made have helped me so much, offering hope, inspiration and comfort during challenging times.
It is wonderful to share hopes dreams and concerns with others who truly “get it”.
Thank you, we need to look after each other as we continue our individual journeys.
Be well, stay strong,
8XyM.*I now am battery operated!
I got a chance to speak to the rep from the company ,. He was there helping the doc.
It was not that bad.
The doc said he thot they would have to stop. My bp went to 200. Ya. Hurt a bit.
But I did it!
So I had to reposition 3 times. I did push ups! Not easy on a op bed thing. But they finally got the right angle.
The curve in my back was in his way.
Then too flat.
Ok. Took experimenting. One more time they said. But my anxiety and pain elevated. I was exhausted. The total time was 2 hours on the table. They assure me now they have a map to work from and the permanent procedure will be easier.
So then arthritis in my back made it hard to thread. Arthritis? Stenosis? Bone spur.
My doc said everyone has arthritis so nothing to be concerned about.
He did say to me "You really powered through there at the end and I really appreciated that!"
Well after all that you bet I wanted success!!!
But nice someone recognized the sacrifice,the effort,the courage.
I felt a surge of pride,childlike,those words were needed. Bless my doc for the recognition and not taking all the credit. But he is heroic,he never gave up,he tried even though he thought he went overtime.
And they kept me going with the IV courage juice.
So I have just 1 lead in the epidural spaces threaded in the ladder of the spine. 8 electrodes are on the lead, impacting different nerve bundle stuffs of lower back, lower right leg and foot.
The second one is backup and not needed really.
Right away I felt my foot tingle with needles and pins. So I was taught to use the remote and tune signal down. Success!!! I am a responder!!! They said it went perfect!!!
Praise and Thanks!!
The transport driver arrived and we rolled out only to find a van without access to the seats from ramp. I could not step up. I had to go back inside,call for another,wait. 2 hours they guessed. So I was put back in reclining chair, hooked to decices,BP cuff,O2 finger thing, and quite exhausted & happy, I drifted off a pain pill that was sure to help.
Then I WAS AWAKE. Two nurses were saying Ok Shes back, numbers improving, call the doctors from a close by department,call my neurologist.
Wait.wait.wait. wait.wait. It All went well.send me home!
Two doctors asking me about did you fall asleep? Stoopid Q. I said I already know I have apnea but they want study before they send me around on oxygen. The doc asked nurses how did they notice my level drop.
One nurse behind desk was grinning and said "Her Snoring. How could you miss it?"
That is all it took for me to dissolve.
I accused her Is this funny? Sure she thinks so,she is laughing about it. Hilarious! Thanks? Is this about saving me? And I swear the nurse covered her mouth and face with both hands and they all got a huge chuckle saying no its what we look for......
So there was that annoying sensitivity of mine...but cmon, saying THAT was unprofessional and cruel when it was obviously going to embarrass me.
And I had already repeatedly told those 3 nurses that I had trouble with things moving fast ,multi tasking...like them buzzing around me caused nervous chaos vibrating around. Another kind nurse said comforting things,buzzed too but not annoying...softer buzzing yet still hurrying me. Every move hurt me. Breathing hurt. I had told that to my doc. She put it down to my weirdness.
Then they explained how risky living with apnea could be. Hearing someone say in your ear, You could pass away,or have another stroke.......tears broke,my soul broke, why had I endured so much to just stop breathing. That funny sound was me choking gasping in a final breath obstructed. What is there to giggle over?
Each doc made a speech...and both curiously reached out touch my hand. Interesting gesture that failed to comfort. Why? I just said that it was terrifying to have all the fuss...in the event something went wrong I did not dream of This Way.....
And I felt guilty they called my doc to come back.....
There he was as I emerged from the Loo...saying just go to rule things out,get what you need....
I could not hear or listen any more.
For once I understand the worldview of the autistic....
I was overwhelmed...like the kid at an unwanted birthday party. I am THE brat. The obstinate one. Unknowable. Unlikeable.
Yet I suspected the ER would send me back to the nursing home for my doc there to treat my sleep apnea.
So I said Of course I agree to go to the ER BUT I said I already have appointment with sleep study.....ok my doc arrived and the medics were there.....
So in the interest of urgency and decency....I climbed on another tiny bed.
And then the truly OUTRAGEOUSLY HILLARIOUS moments of the entire saga of the day unfolded.....as they loaded me into the ambulance, the medic says "We are only driving over to the next building. The outpatient pavilion is actually at the ER. They could have pushed you in a wheelchair there.
My Insurance WILL be thrilled!
The triage nurse said I was not going strait to a bed......as if the ambulance fiasco was discovered....she put me in the waiting room....said the wait was estimated at 3 hours. I wore a mask and lamented at every coughing contagiousness surrounding me. And then they gave me that famous turkey sandwich,banana,graham crackers, and the npo fast ended. That was all I needed to feel normal again. And I dozed off in the waiting room where no one was watching. And if no one had noticed,I had a thing shoved up my spine, threaded,pounded.....the numbness wore off. I begged for pillows to sit on,lean against.
Somewhere in there they went in same arm same place as the earlier IV but unsuccessful at getting blood. A second try was a fool wanting to use that same arm, I was not drinking water, so I heard myself screaming rather than arguing. He left and I felt they were disgusted. No comfort.
I mean the whole day was tortured. Every hour.
I scream and no one says sorry. They want an apology from me for not providing them blood.
So then they wanted me to sit in the bed reclining on my back. I sat in the chair padded all around sleep overtaking nodding flopping over and then begging for my pain medications.....as expected to need them....in the beginning.....and the doc sent me away saying,well you have had it for a while,so just go see your primary doc, you know it is sleep apnea.
By midnight this Cinderella was removing her shoes and sitting in the chair,then sleeping in the bed. Without oxygen. Even though I gave the papers, told the tale.
We will call the doc. That is a broken response,and today Between napping,totally day passed unnoticed, but tonight I was adamant. I finally said then return me to the hospital, and then oxygen tank came in for me to use while sleeping.
The medic said he had sleep apnea.
He was looking fit.
That encouraged me to resist despairing I am on the oxygen.
I wonder if lack of O2 is making me the irritable person I am. Or maybe 4 years of continuous pain. Or maybe sick of people
Who are just annoying.
Oh the old roomie who said I made it impossible for her to remain well she sent well wishes. I ignored it.
I go in the morning to try the thing.
I am scared.
I must shower tonite. Now this is a problem as usual.
I have new roommate. I have not seen her yet.
My admirer brought me a veggie drink that is horrid. Thought counts. He said old witch former roomie told him I had surgery tomorrow. I said No I did not. It is a procedure
I will be awake.
I will endure pain.
I will feel the nerve bundle awake as tūhey thread wire leads into my spine with a local shot only while everyone is there.
I said her name should never be rmentioned again. I told him she was jealous. I said she was Awful to me. She said Hurtful things to me. I said I was glad she was gone and I will never see her.
I said to him. Do you even understand me?
I know there was an audience. No one offered to translate.
I heard my voice hoarse from talking all night to my friend. I was sleeping. He woke me. He said were you sleeping???
I just blurted. Emotion was there. On the verge of tears.
I was screaming Inside. I am WOUNDED.
If I had thought first.
Here it is phoney cheerfulness.
He not speak my language.
He said he not play bingo with me for candies. He gets candies at the store. He says he plays to see me. He said Only You I play Bingo with.
I feel childish. Silly.
There is misunderstanding here.
Yes I know I say.Thank you.
I say again that I do not like our mutual acquaintance. She is a terrible person to me.
I say Yes thank you for the gift. Thank you for coming. I tell him how to get out of the room.
He says I only want good things for your life.
I feel now like I should have pretended. Shut up.
Then I hear him call for housekeeper who brought him up. I hear talking...then in English I hear Yes I know you did not do anything.
I listen to that and think I cannot look at him and not recall how she mimicked his calling my name and said blahblyblah.
I needed him to know it all but the words were lost uselessly not there.
He was worried about surgery for me. I was angry she mentioned that to him. She stole something. Fake concern.
And no he is so innocent. Just came to visit us.
But 2 women cannot share.
I knew she was angry when she heard him call me that day. She resented that he returned calling my name not hers.
But I feel violated as people come in the room saying you have your room back. WT?
And then the nurse is there that I despise. She makes trouble for me.
I shoo her off like a fly.
Now today I am selfish. I already gave it all. I was nice.I shared food.nail polish. My life stories.
I feel that it may be true that no one likes me. I am odd here.out of place. Pain makes me need.Ask.Demand.
They only see that.
Not tears.not alone. Not ME.
I wanted him to see it.
No one ever does.
They walk away just always saying it is not their fault or problem.
I always show it to them. Stoopid.
I told the nurse I reported her so stay away from me. I say Report that to your supervisor.
Tonite my cna says she is too busy to get me into shower. No one told her early.
I was sleeping.
I said I informed them.reminded them. I need a packed up breakfast too. And a mug with tea and fixings. I will eat at 6am.
Then NPO until dinner prob. Just water. When it is ok. I will hurt. It does for spinals.
Will this be so?
Well I want to just survive. I do not want to lash out. I thot I gave from the heart. I was shot at by all sides. I speak up.
I may be snotty. But I am good. Better than some who speak behind the back saying oh they are trash then
2 nurses came to speak support to me about that mean nurse. They dislike her. They dislike what happened to me left in shower without pain meds. There is decency out there.
God sees me.
Please keep watching.
I am speaking up.
A supervisor that used to care for me still does and I gave him a run for the money headache when I first arrived here in agony.
He went to Paris and brought back Miraculous Mary medallions in a laminated wallet card with a prayer on it. He saw my rosary and we chatted about Catholicism and he promised me one. Last week he appeared with it. I am so grateful for this gesture and I believe in the strength he has loaned to me.
I also appreciate that some know me here understand me and this pain I live with.
I have many who know me well here and yet they are employees and I am just a room number. But some of them well they give you a gift of love.
And then days later my new roomie that I welcomed tried to make friends with staying up on a thunderstormy night sharing stories loaned my nail polish and then she woke up saying she was warned not to stay in the room with me when she had the chance that no one here liked me and she was tired of hearing me say I also needed help from the cna. Well there is one call light and that we share...I said I did not mind waiting.she can go first. Well she had simply collected info for ammo. She said everyone was sick of hearing me.
It was cruel. When I tried to tell the nurse that I had no problem with her and did not provoke her she mocked me saing oh the little girl is gonna cry.
I firmly stated I am not crying.
Oh then it was considered argument. They told us to stop.
So I have ignored her. No more chatting.
They still give us 1 cna to share. When I need something I walk to the door.
When the cna comes in she immediately says I pressed the light. Help me.
So what if I also want a coffee too.or pain pill.
Did I mention that a blind man here is my friend. He asked me to be his girlfriend. I said no. This was years ago when I met him. But I visit and accompany him to bingo. He invited me to his birthday. And so we are good friends. He gives roses and I get him stuffed animals. But there is no physical affection at all.None. I am positive it is forbidden and I do not even want to go there. He is 16 years my senior and his english is poor and my Spanish is worse so we are an unlikely pair but I take him to activities.
So....he comes to the room. Calling my name. Unaware she is there! He is surprised! She says hello friend of 13 years. He is friendly back. He asks where I am and I chime in. He visits and I go to
Well, I did a fast trip to Florida to attend my first grandchild gender. Apparently, I was the ONLY one who didn't know. But it was wonderful. I cried for I was looking at my baby and knowing he was a man and a daddy. They had a die dust bag they put under a truck tire to do a burn out, spinning a tire on concrete, which made a TON of smoke and burning rubber smell/ YUCK .
The travel down was interesting, to say the least. I flew from Philadelphia to Dallas/Ft Worth.. first. ( all in saving money and I forgot about the time difference (( they are 1 hour behind us)) to dis board, wait for roughly 20 mins and re board the same plane to go to Orlando. Oh yes, this was a Disney flight. I am so glad I down loaded pod cast to listen to. So then exiting the Orlando airport, which is massive, but I normally walk across the bus lane and get my rental car. Again, in the spirt of saving money, I went off site. Ok No biggie, I received and email saying I will get a shuttle to the rental lot. Did I forget to say it was like summer. 82 ( kinda chilly for Florida but summer for NJ ) in jeans and standing out side for the shuttle... and waiting... roughly 45-60 mins waiting and I called them asking if someone would please come. 25 mins later the shuttle came, and we drove for about 10 mins. Holy cow. But in the long run, things don't go as planned but it's an adventure. Finally got the car and headed out. Seeing at night and raining,,, it was a journey. I literally drove to 2 mins away and it was to much for me so I called my son and he and his girlfriend met me and he drove me to their home.
Ashley, my son's GF, was kind to give me her bed, which was made in heaven. Her family, now my family, are absolutely wonderful. My ex ( my son's father & his GF) made up their backyard into a beautiful party site.
All I can do is smile. ( the picture of Ashley doesn't do her justice) she is lovely
It's ironic...I write in my blog here but my hopes of beginning my own website and blog scare me to death. I've not studied anything about doing this before. I have made a Pinterest account where I am saving every idea and bit of information I can...to a locked board. I am averaging 1-2 new subscribers a day. I try to engage people when they are interested, follow back, pin back, and I try to pin with purpose. Honestly, I don't know what the heck I'm doing. It's still a personal account but I have plans to launch my blog and business account at the same time or close. I'm starting to feel the stress of not knowing what I'm doing. I have nothing to lose really but time and I will have to make an initial investment into myself and hopefully will be able to do this as time goes by. My goal is to learn how to monetize my blog and have it supplement my disability (all is still riding on the decision of that so far). I don't want to put myself in a position where I am in over my head and can't get to a happy calm place. Everything I read says I need a niche.😳 I don't have a niche or can't decide on a niche. I hope I understand what a niche is lol. I see many blogs that are started by someone in my position. Of course I only know of the ones that did not fail. FEAR FEAR FEAR! Why am I so afraid? What am I afraid of? Failure? So what if I do fail...try again? Am I making this idea too serious? I want to be passionate about what I blog. I want to want to keep doing it. I want to be real. I want to learn something. I want to share what I learn, know, like, what I am excited about, how I might can help someone...so many things. I have to be able to separate my personal from my business. I at least feel that way...I've always been private. Anyways, I just wanted to get out what's been going through my mind lately. It helps me have perspective. Thank you guys for listening.
We have just had one of the hottest November days for decades. What a difference a couple of weeks can make. The weather was still fairly wintery when I went out by train to Armidale one of our little inland cities to stay with family friends. The days were warm but the nights were cold and I was glad of the couple of blankets and heavier cover. Then one morning what looked like heavy snow clouds blocked out the sun and it really was cold so on went the winter weight jeans and jacket. I was glad I had gone out with a range of different clothes.
Armidale is a University city so I went to the University several times as my friend is doing a Master of History course. Isn't it remarkable to see buildings looking like big splendid piles of bricks and mortar in an otherwise rural setting? Of course this is a thriving town set in what we call the New England district so rolling hills, good rainfall and fertile soil made it an ideal landscape for agriculture of all kinds. That makes for a rich community who could easily afford to build such a magnificent University. Such a contrast to the practical but modern University buildings on my part of the Coast.
It was good to get away for a few days, I find when I am away from here with friends or family I am able to see life differently from afar. And it is good to have different conversations and to step away from purely domestic issues. I went on a visit to several historical homes and as my friend is a guide at one of them was transported back into the past to see how hard life was back a century ago not for the nobility but certainly for those who worked for them. Remember the butter churning, wood chopping, boiling up the sheets? And all done by young girls in service who also did the heavy lifting as the house belonged to three sisters and no men folk were allowed.
It is good to be reminded that we are so lucky to live now with so many modern appliances to make our life easy. Okay we have to do our own housework but it is not so hard is it? I was woken up early every morning as the house next door had poultry, both hens and ducks in their back yard and the rooster crowed as early as 3 am. I even cooked a couple of meals while I was away, it was strange getting used to someone else's kitchen. But it was so nice to be out in the country, I really am a country girl at heart. Thanks for the memories.
Then home and back to the routine. A couple of our older church members now have health problems so I visited one in a local hospital. I did some work in the garden the first couple of days I was home but two very hot days put that activity out of the question. It is easy to do nothing but that is not what I need to do. It must be Spring cleaning time so a minor declutter is in order. ( I think I say that every year about this time). This year has gone so fast with all the medical appointments that so much looks neglected. I wish I felt more energetic but I do feel my age now. More's the pity. On a bright note I had two lunches and one dinner out this week and one was actually a date. (Shhhh! it's a secret.)
On Tuesday I get my roster for the Lions Club Christmas raffle and an idea of what else we have to put our names on rosters for. There is still plenty of activities to participate in for church, with the Friday coffee morning, craft afternoon etc. And tomorrow is my preaching day. And I still have the trip out to Broken Hill for Trevor's birthday to look forward to. I like to be busy as long it is practical. There are a couple of medical events to get over, one at the Lymphodema Clinic and one at the Skin Cancer Clinic. And then there is all the planning involved in Christmas.
It is six years since Ray's death and much has changed, other friends have passed and l have some newer friends now and a different kind of life. Of course I would swap the life I have now for my old life in a heartbeat if that was an option. But it is what it is.
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.