The past few days have been tense. My Dad and my Stepmom hold secrets. During this time when we all feel so lost and vulnerable and want/need transparency. When my Dad was in the hospital (Vanderbilt) and was told for the 2nd time "You have cancer" we were all (including all the Specialist and Doctors) so happy to hear "It's not metastasized lung cancer... It is altogether a different cancer". That is HOPE. Just that knowledge. My sister was at the hospital a lot. Not me, I was sick with strep throat and strokey as I call it. It's an hour drive. I'm glad I didn't go... I didn't know I had strep throat when he went to the ER. Vanderbilt is the most specialized hospital we have in Nashville. It's a research hospital and a University hospital. Vanderbilt University is known for their Med program and Vanderbilt Hospital is state of the art. Daddy's Oncologist team came up with a protocol they felt would give my Dad the best chances. He could even go to Spring Hill and get his treatments. It is just 30 minutes away. He had said he wanted to go back to the local cancer center which is not affiliated with Vanderbilt. My sister was so upset...she got into an argument with my Dad and he promised her he would go through Vanderbilt. (BTW I didn't know any of this happened for quite some time after he had been home). Daddy lied to my sister that night to stop the argument intending on going to the place locally all along. Janice my stepmom held his lie secret. I'm oblivious... It came to my attention one day when a therapist came and mentioned the local facility. I stayed at my moms for a few days and I talked to her about Daddy going to the local place that I thought he was going to the Vanderbilt facility in Spring Hill. My mom said he is he promised Tammy (my sister) and at that moment I realized I knew the lie I just didn't know it was a lie until right then. I stopped talking. I talked then with my Dad and Stepmom and asked them some hard questions. They told me and told me to not say anything to Tammy. 😞 This scenario is horrible for me. So my dad had his 2nd round of chemo this week and it has hit him hard! Then today we had the main OT come back for a reevaluation because my dad fell day before yesterday. Janice woke me up at 5 am and said you need to come help me. I went to the bathroom and Daddy was on the floor and couldn't get up and Janice couldn't get him up. He was sitting in a large area of liquid (urine) and his feet were slipping. I grabbed towels and a non slip rug so he could get his feet steady and then together it took me and my Stepmom like 20 minutes to get him up. He is on constant oxygen and had not taken it to the restroom. So I ran quickly and got his portable oxygen machine. We got him back to bed using a walker and he layed down and went to sleep. 😐 Then last night he was in the bathroom again without his oxygen and his O2 was so low that he couldn't think straight. He was going to fall and my Stepmom called me to the restroom. I said hold him if you can and I ran and got his portable oxygen device again. He kept saying I don't need that oxygen..when I got back to the restroom we got him onto the toilet and my Stepmom told me he still had to go. I by that time realized I was standing in a pool of urine. I had to help get his undies down because he couldn't and Janice couldn't. (BTW I'm completely OK with having had to help my dad get down to his birthday suit. He is my dad and I would only choose to help him. I don't think he remembers or he would be really bothered by it. I'm glad he isn't upset). Today while the OT was there I sat in the same room. He told her yes he fell because he feels weak but his air (oxygen) has been fine. I am very aware that this is not true and my Stepmom just said nothing so I told her the truth. She explained to my dad that he has to use the walker and his oxygen right now for his own safety. He started to argue but I said "Daddy do you want me to put the really long tubing on your oxygen machine?". He said he didn't like it because he gets tangled up in it. So I suggested that he take his portable oxygen device with him to bed each night it was light and that way he could easily switch cannulas when he needed to use the restroom. He could hang it on the walker and no long tubing would get wound around his legs. He said yeah I can do that. My stepmom then said "Well I haven't ever seen you get wrapped up or tripped by the tubing". He told her he has he just hasn't told her. She was looking at me or sorta glaring at me. I felt like she was angry at me...even though Daddy agreed with my idea. She then said well ill take that other walker and put it in the bedroom. The walker she is speaking of had been hers during her hyperparathyroid issue and after removal of 3 parathyroid lobes. She fell with that walker and it was really bent up. I had fixed it at the time for her she did not want to get another. I told her Daddy didn't need to use that walker. She said well so and so gave me that other walker your dad's been using. I then said well let's order Daddy his own. I'm thinking... 2 walkers in great shape one for each room. His insurance will cover it he has not had one ordered for him yet. She argued with me that no so and so had already given him a walker. I then just said "That walker that had been bent does not need to be used period. Daddy will have to put all his weight on it at some moments and it wouldn't be safe". I also walked back to the bedroom with my stepmom and said we have to clear this whole path from your bedroom to the bathroom to his chair. It has to be safe not a trip hazard. His bed only has like 7-8 inches from his side to the shelf on his side and past that is his big oxygen machine and then all sorts of stuff on the floor. (Remember - hoarder/collector) and the hallway has stuff on both sides. As you go into the kitchen there are cabinets and shelves with hundreds of cookbooks and glassware. It's very narrow in that area. I think Daddy had to turn himself and the walker sideways. I made a comment about what I felt we needed to do. She was coming unglued...yelling everything is fine. Then she said "I'll move the furniture". I told her she was in no shape to move big furniture period that I would get with Tammy and we would come up with a plan. At that moment she just taunted me that she was too going to move it that she had moved a lot of furniture. I just said not this time Janice. I had to go run errands. I also had to go to my sister's office and talk with her about what was going on. (BTW I told my sister what the lie was and she had said something to my stepmom yesterday. I didn't even get my foot in the door before both my dad and stepmom bombarded me with questions. Tammy and I g ad agreed not to say anything about me telling her... I have to live there. She didn't tell them they just naturally assumed. I played dumb and after about 10 minutes my dad said OK I believe you. So yeah its been a rough week). I talked with my sister about everything. I know that home health will evaluate that he is in a safe environment and that includes his ability to be free of trip hazards. If they don't comply, the risk that my Dad can be removed from an unsafe environment and put in a nursing home is high. I have also been worried about when I move out which should be this month. Will my stepmom have the physical or mental capacity to handle a fall like the other morning? Will it trigger in her to call 911? Will she just be there running around thinking "I don't know what to do"? Then tonight after my dad went to bed I sat down to talk with Janice. It turned into something really negative. I can't write anymore, I'm exhausted. Plus I have written a book. to be continued...
Yesterday my dad had his 2nd round of chemo (4 different kinds of chemo drugs). He was shaky and weak when he got home yesterday. At 5 this morning my stepmom wakes me up in a frenzy. Daddy had fallen in the restroom and she couldn't get him up and he didn't have the strength to help. Plus he went to the restroom without his oxygen so he was running out of air. It took us both 15 more minutes before we got him up on the shower stool my stepmom had grabbed out of the tub. He seemed OK, no broken bones, but a pretty nasty gash on his arm. We cleaned and bandaged him. I went and pulled out the walker he has yet to use but he did this time. He was in the bathroom so he basically fell and then peed all at the same time. Everything was wet, his clothes, the floor, the top of the potty and anything else nearby. My dad just there breathing in oxygen heavily (I brought him his Mobil oxygen machine)... All he kept saying was "I'm sorry". Which we quickly told him there was nothing at all to be sorry about. This is a harsh mix of poisons they are giving him every 3 weeks. It's hard to see my dad be affected so much. Please keep him in your prayers. He needs every prayer we can get. 🙏
I have worked so hard, waited so long, dreamed so much, needed so much and I feel the page turning. I have such an overwhelming feeling that the page is turning, the Chapter is ending and a new one is beginning. I am full of anticipation, gratitude, excitement and fear. For the first time really... This chapter is about me. I can't explain my feelings... I am closing my eyes and letting each one wash over me. I feel it coming. It's overwhelming. For some reason even though I have fear I am not afraid. I know this sounds a little out there...but I feel it. Thank you Lord. I can't express this enough. 🙏
I had a massive bilateral cerebellar infarct in the PICA region. Since July 5, 2015 a whirlwind of things happened and eventually after a very long evaluation from a Neuropsychogist... I was diagnosed with CCAS or Cerebellar Cognitive Affectice Syndrome. I still have deficits that are not considered as part of CCAS symptoms but this diagnosis (which may I add is extremely accurate according to what happens to me daily) has been quite the controversy. Something a stroke survivor never wants. My experience has led me to my wonderful Psychiatrist (I credit him for believing in me and researching on my behalf which over 2 and a half years has led to the best help I have had thus far). He is absolutely there for me and continues to work to find a better treatment. I thank him everytime I see him which is a lot (every other month). I also have Cognitive Behavior Therapy each week. I want to point anyone who is interested to the growing information about CCAS to the many articles which are growing quickly in number. Science and the Medical world have in the past thought the cerebellum was only responsible for a very specific job. One that did not include emotion at all. Newer research has proven that is not the case. The cerebellum contains more than 50% of all the neurons in the whole human brain. The "Little Brain" is doing a lot more than we realize. Thanks to research lead by Dr. JD Schmahmann and his colleagues there is new medical science being discovered about the human brain. All in all it is fascinating and for me it is miraculous. Here are the words I searched on Google:
Cerebellar Cognitive Affectice Syndrome bi-polar, schizophrenia, ADD, mental illness
If you are fascinated by the human brain, curious of medical discoveries, or like me and are all of those things plus (I had a cerebellar stroke) and I hold a passion for learning about others strokes as well... Heck the brain in general!!!... Then this will interest you. 🙂 OK I also want to share why I am cooky lol.
My heart is all a-flutter as I write this. I have so much on my mind, so much happening... Life is moving right along. I come here first to share... You guys are family. I am practically giddy with anticipation. I also tell my local stroke support group but I only see them once a month. I tell my mom, my sister and friends I keep in touch with. Where to begin... My new runs the gamut. Very good to very not so good. I'll just begin... Good first!
First, Spring is coming! I am utterly thrilled!!! The trees are all turning green, flowers are popping up every where, it's getting warmer and warmer, the sun is brighter, I can wear flip flops! Perfect timing for finding my own place to live.
I have lived with my dad and step mom for 2 years now. I moved here almost a year and half after my stroke when I left my ex fiance and went back to my hometown. A lot has happened. The biggest thing is losing a big part of my independence. Basically, my bedroom is my place of solace. I can shut the door and just be in my own spot. I miss having my own place and all my things have been in storage. I have been fighting for SSDI since before I left Nashville. I guess it was a year after my stroke when I applied. It's been a long hard road and I have been basically dependent on others since then. My dad gave me a room to stay in, my sister gave me her 2nd car she didn't use to drive, my mom practically paid for everything I needed and treated me at times as well. She was always buying me clothes, shoes, things I liked or wanted. Of course not everything, but I am so overjoyed for everything she did buy. Mom also paid for medical things and all my meds (which is extensive), she bought my gas, paid for my haircuts, paid for everything Kitty needed, she was my advocate always and my biggest support. I have called her everyday multiple times a day. She has been the only person who can help me calm down during a panic attack. Well not only her... A few others as well. I know I must drive her crazy! She is a rock, she is my rock. I love her to the moon and back.
Not being able to work is a hard bite for me to chew. I've always worked. I did have the privilege of staying home with my daughter until she was 3 though. I enjoyed working and the freedoms that come with it. The struggle to accept this about me is real. Thankfully, I won my SSDI case 100% in December of 2018 and it has been a whirlwind since.
To begin, I finally had insurance. Having no insurance and not having the opportunity to get any after having a history of stroke is scary. There were many opportunities for a medical therapy I had to turn down. I desperately needed Cognitive Behavioral Therapy due to my many cognitive issues but haven't been able to until recently. My Neurologist told me all the time "Tracy you have to get into CBT... Possibly for a very long time." but what could I do. I was very blessed to qualify for my hospital's patient financial assistance program and all my Dr's are from there group. Psychologists are not a part of that group. They are private practice only and without insurance it is only pay cash before any therapy period. Now, I can see a Psychologist. It is already helping me a lot.
Because I fall under very poor 😒... I get what's called Extra help through Medicare. It automatically qualifies for me to have Medicaid as well. So I am considered duel eligible (Medi/Medi). This also affords me a very big discount for deductibles, office visits, what is called the Medicare donut hole, all my co-pays, and is extremely helpful with my Medicare Part D (Rx). I'm so so blessed. My generic meds cannot exceed 1.50 per Rx and my name brand cannot exceed 3:50 per Rx. By May I will reach catastrophic status and have 0 co-pay for meds, just 4.50/month for my plan. 😃 All I can say is I am blessed.
I am also waiting as patiently as I can for the announcement of "I have my own home to move into"! I've been talking to Kitty about it and telling her that soon it will be just me and her and she will have lots of new areas to explore. I mean all I can do is be patient. 🤪😳😬!!! It should be this week that I get to tour the place and fill out and turn in all my paperwork. Don't worry I WILL share the news!
So on the not so good side (but really not so bad) Daddy is still battling non Hodgkins Lymphoma. He told me yesterday that he is losing more hair than Kitty (which is a lot). I sat with him and told him I met many going through chemo when I had my job near Vanderbilt Hospital that lost their hair too but it grew back! 🙂 He's been doing pretty well and his OT said this morning his sight is getting better in his left eye where the mass had gone through the orbital bone and really affected his eye and all the things that connect the eye to our body. So that is great! He's a bit moody but who wouldn't be. My stepmom is really struggling emotionally. I sat down with her and said to be sure and make time for herself that being Daddy's caregiver is going to be really hard work and it's important she take care of herself. My message doesn't quite make it through to her... I understand why but I hope she remembers our talk when she needs it. Daddy looks to her for most things... He doesn't let me help a lot. I do what I can to help them both.
My anxiety has been really really high the past few weeks. 😳 Lots of panic attacks (no trigger) and a few times seeing or hearing things. This happens to me sometimes. I go to my Psychiatrist tomorrow and will fill him in. I think I've been swaying between being depressed and being excited. Just so much going on right now.
Thanks to those who made it to the end of the book lol. I know I write so much! If you ever have to tap out it's fully understood. Another release of "stuff" in my reality. I'm grateful for the blog. Hugs to all of you!!!
I can't believe April is here already. 🌷 Spring Fever has spun its' spell. Flowers are popping up to smile at the sun and trees are budding and flowering preparing to burst into life. I really like this time of year... It's a time of new and fresh... New beginnings and new adventures. The drab of winter is replaced over a few weeks with color, warmth, joyful beginnings, everyone is looking up to the sunshine even the flowers, inner hopes start to infuse many... A virtual treat for the senses. Most of us get a bite or two from the spring bug. Today, I ventured out and picked up a couple pairs of sandals for the coming warmer weather. Things are moving right along in my life. I was chosen to apply for THDA's voucher program to help with housing and guess what! I qualified! I have received my voucher to look for housing in my area that will WORK with THDA (Tennessee Housing Development Authority)... Basically section 8 help. I ran a little ad in our local buy, sale, trade so that I maybe could find something in my qualification range (which proved harder than I had expected). Guess what! A long time friend I have since 2nd grade reached out to me. He owns a real estate agency and he said he wanted to help me find a home. I was not expecting that and am over the moon thankful. Jimmy (my friend) has a duplex open that they are redoing. He said it would be about 3 weeks before I could see it they are gutting it and replacing everything. I have about 1 more week and I am sooooo excited. I have driven by several times in anticipation. Once I see it and want to try and get it he and I will fill out an intent to Rent from and the THDA comes and inspects it. Then using all the variables from rent to utilities to need to %'s of gross income they then will approve or disapprove... Many times if the values are close they will work with the THDA to gain approval. So I'm not holding my breath, I am allowing myself to get excited fully knowing that I do not know the outcome. I'm OK with that... I choose to believe that I can do this (fear of trying in my eyes is becoming more and more a path to failure... If I fall ill pick myself up, dust myself off, and try try again!!! I told God in a prayer that I am giving this to him. Trusting that no matter the outcome it will be right. I'm not scared or worried. I'll take it as it comes. Breathes in heavily, it's such a free feeling washing over me. I have started a list of things I want to do or have, how I want to do something, what kind of flowers I would love to gaze at, take care of. If not there then somewhere :). I will keep you posted on this new and exciting adventure... It's so fitting for the season!!! So question... What great advice can you share with me to make this adventure as exciting as it can be. It can be about anything
i.e. Flower choice, suggestions about what would be really enjoyed, a decor idea, a storage idea, a l've had a stroke and I have stroke brain idea, ANYTHING!! PRETTY PLEASE. 🤗🙏🤩🙋♀️👂🤞🏡🌷🏵️🌸🌻🌺
It's been a while since I have written. Things are changing...some good some not so good but I'm rolling with it. I am happy to say I have started to volunteer here on Strokenet as a Chat Host since the passing of our friend Denny. This is for you Denny and all the other great members here at Strokenet. I hope I do it justice. So far it's been a joy and I have caught back up with some chat friends I haven't seen in a while. I welcome any of you to join us in Survivor Chat Room #2...my schedule is Monday 3-4 EST and Wednesday 3-4 EST but there are many other scheduled chats. Pull down the chat chat drop down list at the top of screen and check out the chat schedule.
Last time I blogged, I think it was the beginning of 2019. I talked about my past meeting my present. Things in that area have been calm since and no pressure. I'm glad. Now I will update you on my dad and his lung cancer journey that started last year. He had a scan in December I think and was told the cancer is gone. I know he felt so much relief...we all did. Then in early January his regular Oncologist called (the Oncologist that read and gave my dad the good news was not his regular Oncologist...he was on vacation). He started apologizing first before anything...more than once. That is when he told my dad that he wanted to look at his latest scans himself and that they had missed a new cancer spot on the opposite lung. He did tell my dad that he would have to have a biopsy to be sure but he was pretty sure. After the confirmed biopsy my dad was told it was stage 1 and not near a lymph node like the first and that he would only need radiation 3 times. This time would take longer and would be stronger and he would be strapped to the table for accuracy. It was a hard 3 treatments...painful because of the length, being strapped down and having a larger dose. He seemed pretty depressed. Since then we have waited until the newest scan last week. He has had pneumonia in between those times and was hospitalized but thankfully feels better. My stepmom told me that his newest scan shows a "cavity" in a new area. I put cavity in quotes because they are not sure what it is...a left over area from pneumonia or a new cancer spot. He will have it tested soon. I will update when we know more. Until then...just helping to keep his spirits up.
I blogged about winning my Disability case and 1st having Medicaid for a month and then Medicare and now Part A, B, and D. The Medicaid was backdated to June 1st 2017 and my Medicare to January 2018. So I have been busy working on past bills and collections. I've even sent my medications in since my mom paid cash for these (I could not). Having trouble though...some Medicaid says they have determined it not medically necessary, some is not approved because I got more than 30 days at a time (90 day Rx), some are even when i was hospitalized last year with a really bad chest infection and severe asthma and on oxygen (deemed not medically necessary. 😤 GRRRRRRRRR I am being penalized because I got 90 day Rx's when I could to save my mom money....I had no idea I would have retroactive Medicaid with ridiculous rules. How could I have known. Besides those 90 Rx's were the same as 3 30 day Rx's. 🙄 So it's been a sort of exhausting battle...I'm still fighting.
I also had positive dreams of being able to get my own place when I won. However, I can't afford housing on my SSDI income alone. I am going to have to apply for our state's section 8 voucher program to help me. There are 4 areas in TN and each opens on the "waiting list" for 1 day.
EDIT: I had stopped writing this blog a bit ago so there have been some changes. First, I am finally on the housing list (pre-ap list)...so happy and breathing ok ready for the next step. I am truly enjoying being a part of the volunteer team here and hosting some chats. Thank you to all of you who have joined in and please I invite anyone who would like to come hang out (check chat schedules). I am now doing cognitive behavior therapy once per week via the internet. It's going great so far. 🙂 I'll just end this blog with a hug and thank you. Things are changin...some good and some not but I am well. Looking forward to the rest of March.
I think 2019 could hold so many happy beginnings. I'm excited, a little scared, feel blessed and look forward...something I haven't done in a long time. I have never lived alone! Believe it or not I'm 47 and have always lived with someone else. For the first time ever I am really looking forward to living with just me. 🙂 (and Kitty) I'm trying to take in all the new things happening since I was approved for disability. SSI, Medicaid, SSDI, Medicare, retroactive benefits...it's all a lot. So I'm taking it one day at a time...thinking about planning...trying not to think too much lol. Of course this all comes during the holidays which for me seems to be awash with anxiety this year. It's different. My brother passed this year, it's been a year and a half since I've been single, my daughter is having a rough time financially and emotionally, and I feel a weird sense of alone. I know I'm not...my mom, stepdad, dad, stepmom, sister and brother in law, his 4 kids (my nieces and nephews), my sister's kids (niece's and nephews), and all my extended family. I am far from alone. I have secrets though, things I don't talk about often. When I was 3 days old I was adopted (my birth mom was my dad's sister [I call my adopted parents mom and dad btw] and my birth father was a family friend). Both have passed several years ago. My birth mom of a massive heart attack...my birth dad of a brain tumor. So I guess some of my history will always be unknown. This is the first year I have reached out to my two half sisters and something happened that scared me (not good for PBA ); so I haven't reached out since. It's not my half sister's fault which makes me feel bad that I had to step back but I did what I had to do. My whole family including my two half sisters knew about me (the truth). I grew up completely bonding with my family. They are my dad, my mom, my sister, my late brother, etc. etc. My half sister's, however, have emotions about me. So do my dad and his other sister. Recently my aunt and one of my half sisters said how my birth mom was never ok after she gave me up. When I was grown with my daughter around 2 at the time she came to my dad's while we were there. She couldn't stay around me and she wept quietly outside. My dad even had wet eyes and there I was not knowing how to feel but there were no tears. When she passed I was with my then husband and Hailey on our way to Disney World. So when I wasn't at the funeral it bothered my half sisters. It's been something I haven't been able to deal with since then. I did reach out this year...after my brother's sudden death. I just kept thinking "you never know what life can bring you the next day...no regrets." It was a moment...I wonder if it sounds horrible that I just say that. My stepmom had to say something to my dad's sister about saying things to me like "I really feel that Betty (my birth mom's name) mourned herself to death over you. I think giving you up had a lot to do with her death." My half sister says the same thing to me. Well how the f<¿|| do you think that makes me feel. Not only have I felt like I don't belong anywhere at times but to add the knowledge of another person grieving themselves to death over me. It's just too much. I was fluffing 3 days old...it does not help me in any way to know that another made a choice about me and it was a horrible decision for her sanity. I am not responsible period. But these things hurt me inside and I tend to place that pain (whether I should or not) deep down in me. So it will visit me at moments. I don't think my mom, dad, sister, etc. know I feel this way. Inner demons...I suppose we all have one. So Happy New Year and pray this 2019 year brings happiness, healing, direction, and prosperity. (((HUGS)))
*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 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.
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.
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.
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.
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.
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...
So here I am. It's 11:23pm and I'm fidgety, awake, and drowning in needless thought. I'm in a state of anxiety for what I feel is no reason. I can't sit or lay still. I am weirdly hungry like ravenous and I just want to eat again and again...but nothing satisfies me. I lay my head down on my pillow and then pick it up then lay it down again over and over trying to find a "comfortable" spot. So now I'm sitting up. LOL sorry if this is boring but I just need to get anxious movement and thought out of me so I thought blogging would do the trick. It will not in the least hurt my feelings if you click out of my ramblings. Just a warning lol. I am also cold and then hot...back and forth...sometimes all my cover on and it feels like even my bones are cold. So I thought about taking a hot bath. Too much trouble says my head. Noises tonight have been particularly irritating...like my step moms cane tapping the floor as she walks or even my dads cough to clear his throat (he has lung cancer...what is wrong with me). I feel an uneasiness. Hmmm where. My fingers, my stomach, my feet, of course my head, my ears, my eyes, my scalp and hair, my legs and arms all feel strange. My throat and esophagus yep feel weird. I just want to be asleep. I have been looking at this weighted blanket it's supposed to help with anxiety. I just might try to figure a way to get one. I've been reading everyone's posts and trying to keep myself busy mind and body. That way I'm choosing what I do and think...make sense? I am going to look for some more sleep and meditation music maybe that will help. Sigh I know I should be thinking positive, being grateful, putting worry away, increasing my inner vibration, learning acceptance, etc. etc. I'll tell you though, anxiety (clinical General Anxiety Disorder) can get in the way of all that. I hear comments from those around me like "just stop worrying" "you can't think like that" "you just need to get out of the house and do more stuff with people" "we all get anxiety sometimes it'll go away in a few minutes". Hello...walk in my shoes tonight and then we can talk. It doesn't help me. I'm not whining about it I just am being truthful. It is what it is but it sure gets on my nerves. Ha I made a funny. Ok this is TMI but even when I pee it's like a nervous pee. Just realized that lol. So what are any of your suggestions if you suffer from anxiety along with other head stuff?
Things are finally calming down after my brother's death. Still no full answers yet from autopsy but hopefully not too long now. Tomorrow his daughter gives birth to his 3rd grandchild (a boy). It may freshen some raw feelings but all in all it will be a really wonderful day. My dad is actually doing really great during his radiation and chemotherapy...no sickness or really bad side effects. He is just over half way through. I'm so glad he's doing well.
Me...I am finally calming a bit from when I wrote last time. I have seen all my Dr.s in the past month...Neurologist, Psychiatrist, and PCP. The lump on my neck is not seen on the ultrasound so my Dr. says that is good and not to worry. My Neurologist says I am doing well...She acknowledged the Cerebellar Cognitive Affective Syndrome and that Neurology would not treat it because there is not really a cure but my Psychiatrist and Psychologist would treat my side effects. My Psychiatrist had the privilege of seeing my anxiety attack for the first time in his office. Caused by a stroke of lightening and a very loud clap of thunder at the same time. It happened in a matter of seconds and he just was quiet and let me calm down before asking if I experienced this often. YES ALL THE TIME. He left the room and came back giving me a bottle of Nuedexta. He said when this works it works really well let me know in 2 weeks if you can tolerate it and if so then you will start taking these 2x a day. It will not help certain issues you are having but if it helps and is the right path then it will make a significant impact. The rest we will work on...but 1st this. It was a trial bottle of 13 pills. I am pretty sure I could feel a difference but then realized it is over 1000 per month. Crazy...undoable. So I contacted the manufacturer after about 7-8 days and found out they do have a patient assistance program. I am pretty sure I will receive the medication free. I have since finished my trial bottle and the Dr. office informed me that I had gotten the last sample but they are working on getting more. So for now I am not taking them. Still pretty bad emotional lability but calmer now...no more hallucinations, no panic attack in a few days. Just trying to stay calm.
Tonight my ex Narcissist boyfriend sent me a text message asking how I am. This is a common pattern for him. Not sure what he wants this time. I keep emotional distance...and just look and think forward.
So much has happened I don't know where to begin.
My brother was buried yesterday and it was the hardest thing for my family that I can remember. I will tell you that man was he loved...by so many. The visitation and funeral were full...family, friends, business acquaintances, co-workers, and a multitude of others. All of whom grieved heavily for my brother. Everyone so kind to everyone in our family and sharing their memories and offering to be there for whatever we needed. I feel so blessed and know my brother was and was so loved.
It has been a difficult tragedy to bear. There are questions...concerns. There is an ex girlfriend and her brother that have affected things. Though they had been apart for about a year something caused them to be in contact within the last 3 weeks. It wasn't anything good. Her brother showed up at my brother's house and my brother must have felt real reason to call the police. Troy wasn't the kind of guy to depend on authorities when an issue arose he met it head on and took care of it. No one bothers him. He is calm and quiet but he knows his rights and everyone around has always respected his "space". It had to be something bigger for him to involve the police. When my brother passed it was 3-4 days before he was found. He didn't show up at work which was highly unlike him. Troy was a workaholic. He NEVER missed. His co-workers went to his house and the back door was wide open but Troy would not answer when called. They didn't go in...They called the police. He was found in his bathroom on the floor in a pool of blood in a state of rigormortous and decomposition. His head at the opening of his closet and the remainder of his body in front of the bathroom vanity. His house was taped off and processed and his body was sent to the medical examiner's in Nashville for autopsy. His co-workers said they only had a number to his ex girlfriend and she was called. She came to the house and said Troy had no family just her. When it was discovered that it was my brother my sister was called and came right away. The girl said she knew nothing of my sister or anyone else. My sister told the Sheriff she was not family and was not welcome on the property and she was told to leave and not to come back. This infuriated her. The locks were all changed and his home was patrolled off and on through the night. In the morning my mom, sister, and his daughter came to the home and this girl had broken in an was going through the house. My mom found her looking under his mattress. They walked out without her seeing them and called the police. They arrived and knocked on the door and she answered and invited them in like she lived there. She was arrested for felony trespassing, felony breaking an entering, and after searching her car, purse and self...felony theft. She had stolen many of my brother's things and was filling her car up, purse, and body. EDIT: She also was staging his home as though she lived there. She had placed framed pictures of her and Troy around the house. They weren't there the day before because I was there and there were no pictures of her period anywhere. END EDIT. Later that night a male called my nephews phone and said "There better not be anyone at Troy's house the next day."- he thought he was talking to my brother in law (it was this girl's brother). She also showed up at my brother's visitation on Friday night. She had colored her hair and her and others in her car tried to get in. She was told to leave by the director and was told that she was not welcome and the family did not want her there and not to come back. If she did not leave she would be arrested...So She left. We never saw her yesterday but were on edge that she may show up again. So it's been weird and we are all left with questions. He is suspected of having a heart attack but the autopsy will take a bit of time for more answers.
My dad did well earlier this week adding chemo to his treatment. His doctors have suspended all treatment until Monday due to my brother's death. He is taking this hard though he tries very hard to not show it. My mom is a rock...She always has been. My niece (Troy's daughter) signed executer of estate to my mother because she is still so young and doesn't know what to do and also because she is very pregnant with her 3rd child and due anytime. She has stood like a rock but it is breaking her inside. He was her first born. You shouldn't have to bury your children.
Me...well I have been having problems for some time now and this has just multiplied it by 100. I went to my Neurologist the week before last and to my Psychiatrist this past Thursday. 3 seconds after he walked into the room a lightening bolt hit so close and so loud that I almost ended up in the floor. I went into an immediate bad panic attack. Crying was uncontrollable. The next hour was filled with tears, fears...It felt like a nervous breakdown (I'm not sure I really know what that feels like but that's what I thought). He told me that my Neurologist had already called him about me and she acknowledged the CCAS and wanted to fill him in before I came Thursday. I was surprised. It made my crying worse. He talked to me about my disability because he knows I am harboring a lot of stress over it and asked me what is frightening me (I just got a hearing date not long ago). I told him I'm terrified of going back to work because I know I will face stress everyday that I can not handle anymore. I'm afraid it will be turned down again...I'm terrified of exploding from the anxiety. He told me he did not want me to worry about disability that I would not be able to work again. I cried even more. He gave me Nuedexta and was glad I had lost it in his office so he could see. He is hoping this will help and that some of my anxiety is coming from PBA. It has not been a kind drug so far. I am so nauseous, tired and seems like a fre other things. So we'll see.
Thanks for listening and please send a prayer for my family to help them and me through this heavy time. Thank all of you so much! I feel like many of you are an extension of my family and I love you.
Lemme just get all the emotions out at once. I've been pretty terrible lately. It is definitely time to see my shrink. Thank the Lord its Thursday. Let me go through my new range of crazy. I'm depressed, my anxiety gets so high I feel like I will burst, panic attacks almost daily, seeing things, hearing things, scared because I don't know if I am seeing things or hearing things, sense of utter doom Bad Bad Bad, the crickets made me have a panic attack, I keep hearing thunder rumbles but feel to my bones that something horrible is coming...plus I'm not even sure I actually hear thunder but it's there, I have been barricaded in my room 75% of the time lately, sleeping as much as I can, I don't want to be awake, chronic headaches, neck pain...Oh yeah I have that mass on the side of my neck, crying, crying, crying, hyperventilating, completely paranoid, obsessed with trying to find answers on the internet which makes it worse, feel like throwing up a lot, obsessively sanitizing, obsessive in general, oh did I say terrified at times? I think there is more but I'm too tired to write it. So what has happened? Ok so I found out my disability hearing is October 25th good right? My dad was diagnosed with stage 1 non small cell adenocarcinoma of the lungs 'm about a month ago. He has been doing radiation for 2 weeks now and started chemo today. He has a 85% cure rate...another pretty positive note. My extremely narcissist ex boyfriend of 10 years that I left a year ago because he replaced me with a 24 year old 30 years his junior has contacted me twice in the past month. My stepmom is neurotic and a clean hoarder ( I still live with my dad and stepmom for now). I found out today that my dad should be putting the toilet seat down and flushing twice when he uses the restroom. He NEVER flushes pee. He is diabetic, has COPD but in the last month has quit smoking and drinking, has beginning stage kidney disease and now has cancer and has to have poison given to him...radiation M-F...chemo every Monday. He checks his sugar, takes insulin, all without applying alcohol to any place a needle goes and hasn't changed his Lancet in forever. I've been sanitizing as much of where my dad touches as I can because he is overly susceptible to infection plus it is a safety factor for myself and my stepmom. I asked him to flush with the potty seat down tonight (I can flush the 2nd time before I go). He yelled at me and said I am not a Dr. and that the next person can flush after he goes and if they don't like it they can go outside and then told my stepmom they needed to get me a dog outhouse. I am thinking of his exposure or extra exposure as well as mine and my stepmom's. I think he feels ostracized and that I am a reason for that. Sighs....maybe I am. I don't know. I've had to call my mom every night to be talked down including tonight cause I can feel my heart racing and beating so hard. I couldn't get in touch with my daughter for a few days...her phone was cut off and it took a few days to have enough money to turn it on again. I was extremely stressed about it and worried something had happened. Yes this is a total pity cry, pooh blog, or whatever else it can be labeled. It is my reality though at least for the past 3 weeks. Can somebody say thorazine please. I am going to go watch YouTube vvideos of kittens now. Night.
Tomorrow my dad gets his first dose of radiation for his lung cancer. We are all just in a weird wondering mood. My dad is in good spirits which I am so glad. The very next day he gets his first dose of chemotherapy. I pray it is kind to him or at the very least that he is able to be ok with it physically. I know if the chemo is too much that he can just raise a white flag and the Oncologist is really supportive of this. Just praying for whatever he goes through.
Tomorrow I go to my PCP to hopefully get some answers about the lump on the side of my neck. My ENT wants me to go ahead and see Dr. Coil because it will be quicker than waiting for an opening there. The therapist said he may send me right back to my ENT and that was ok but he can do initial research into what it is. I have just kept it off my mind...kept my thoughts on my dad and try to give him positive vibes. So keep us in your thoughts and prayers and send an extra prayer for my dad. Thanks guys.
I have found out some more info about my dad and his cancer diagnosis. He has non small cell adenocarcinoma, it is extremely near to his esophagus and because of that inoperable. He will be starting radiation treatments on the 30th of this month. They will be lower dose than usual but for a longer time so as not to injure his esophagus. They did find 2 lymph nodes that are near and seem to be somewhat enlarged but they scanned him last week and there is no cancer metastasis. So it is still in stage 1 but like stage 1b because it ha increased in size since May. Non small cell carcinoma is good because it is much slower growing and has a much higher rate of beating it. We found out today that he will also have chemotherapy starting on the 1st of August. His odds are 80% with radiation only and 85% with radiation and chemo but it was the Dr.'s decision whether he could have both. The oncologist he spoke with today said that they have a lot better ways to relieve side effects today and he would have a choice to discontinue the chemo at any time if he felt he could not take it. My dad said today that he already feels better just knowing....it took so long to get answers and it gave him pretty bad anxiety. All in all I think we/he has had the best scenario there could be and we are all thinking positive.
Part of my problems after stroke are psychiatric in nature. It really upsets me to be so strongly affected by every little thing. It is an emotional rollercoaster even without any physical stuff at a moment. As I said before I haven't been feeling well and have been really tired on top of post stroke fatigue that never went away. My dad woke me up screaming this morning around 6am that my cat had puked a lake on the floor and I had better get up and clean it up. I told him I would clean it but was still half asleep and fell back to sleep. I had my alarm set for 9 this morning and I got up and put some clothes on to drive and meet my step dad for a moment. It was while I was dressing that I heard the angry scream from my dad to get in there. So I took some carpet spray and a handful of paper towels with me as I headed for the back door. Just as I was about to clean up the spot he told me that the next time I don't get up when he calls me that he was throwing my cat outside that he wasn't living in filth. So sometimes my mouth says what my thought is before I can make a judgement whether to say it or not. My stepmom is a (clean) hoarder. She won't throw anything away or donate anything except food and truly gross stuff. So I said " You already live in filth everyday." Then told him again I was sorry and that I hadn't felt well. He screamed well I don't feel good either (my dad just found out he has lung cancer). I told him I knew he didn't and I had not said a word to him to fuss about anything. So I finished cleaning the spot and threw away the dirty paper towels and then headed for the door upon which he screamed "Now where are you going". I let him know I had to meet my step dad and would be back in a few minutes and left. Of Course the tears start falling as soon as I shut the door. I cried all the way to the grocery store. My step dad said he was sorry my dad cans I wore fighting. He also said that October is not that far away (my disability hearing). But then said you are going to have to get yourself together and only you can do that. I hope you get good results from your hearing but if not then you'll have to do what you need to do and work and get out on my own. I just told him I know. I wonder why I see my Psychiatrist every 2 months and still have panic attacks. Or why I take depression meds, anxiety meds and ADD meds everyday. I just need to get it together. Right? Right. Invisible. No matter how hard I try. Can't help but feel that way sometimes.