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.
For the last 2 nights I have fallen asleep around 7pm and woke up for about 30 minutes before going back to sleep. Each night sleeping 11 hours. I had a Dr. Appointment yesterday due to some chronic hoarseness I have been experiencing since January. She poked all around my larynx area (painful) and I showed her a lump I have on my neck (wasn't sure it was there but she says yes it is and the Dr. needs to know)(she is a voice therapist-part of my treatment). Anyways, I'm thinking great. Now we go forward to last night around 12 and I woke up feeling sick...neck pain, muscle aches and joint pain, headache, sore throat, general Ill feeling. I was also extremely tired so I went back to sleep until 8 this morning. Today my sister's step girls are here while she and their dad are at work and my patience is low. My stepmom is at the dentist having 6 teeth pulled and a lower denture plate placed in. My dad now with his diagnosis of cancer tells me to help my stepmom today and complains about the girls warning their ego waffles in the toaster. The nurse calls from the ENT office and tells me to make an appointment with my PCP first about my neck and then we'll go from there. I have already cleaned the kitchen because I do that. My stepmom left a bag of dirty clothes next to the downstairs door and that means wash them. I am nauseous and my fingers feel swollen and I feel like crap. I just want/need to lay down and rest. Oh and I have to take the trash out. Lord please give me the energy and the patience to get through the day.
I also wanted to share with you all that my dad is going through some health issues right now. Some scary ones. He has already been diagnosed with COPD 2-3 years ago and a recent chest scan showed 2 suspicious spots on his lungs....one new and one that they had noted before but it has grown. Last week my Dad had a biopsy on the new one. He had to be put to sleep and it was done through endoscopy within his bronchial tubes. He is so blessed to have a negative biopsy and no cancer found in the first spot. This past Monday he had a second biopsy where they went straight through his chest into the lung (he had to be awake because he had to control his breathing for the test). His physician just called this morning and told my dad he would make an appointment for him and my step mom both (she is out of state due to a family wedding) to come in for results consultation. I didn't say a word but I felt inside that it doesn't sound good. I really don't know though. The Dr. told my dad and sister last week that he is 97-98% positive that it is cancer but he has to find out what kind...that will determine treatment. I am just trying to be positive and present with my father while my step mom is not here so it won't trigger his anxiety. Please keep my dad and my family in your prayers and thank you so much if you do. Hugs.
I just want to share with all of you that I received wonderful news in the mail yesterday. My disability hearing was scheduled!!!!!! The day is October the 25th!!!! Months before I expected. I spoke with my lawyer today and he had really good things to say. He said he was just thrilled at the judge I got. He is really fair, really has concern for others (empathy), is not swayed by age of the person trying for disability (my lawyer says that there are a lot of judges that really look over some because they are younger...under 50), and he is very caring about mental health issues. He said I really have a good chance just because of that. Everything he said was positive. He told me he will be in touch with me at the end of July and we will work on making sure they have all the health records or anything new and that my file is complete. I am really emotional but in a happy way...it is just overwhelming that I feel some positive and I couldn't wait to share my good news with all of you. I pray and dream about the ability to have my own home and to be on my own. I sometimes try to look at home stuff I like and plan and imagine just being on my own and can make my own decisions. Just crying lol. Any positive thoughts and prayers would be so wonderful.
I've been visiting my sister since July 4 and I've really enjoyed it. Today is Saturday and I will be going home at some point today...it's about an hour away. My brother-in-law has 4 children and they are here every other week...this week. I really enjoy being around them but they all can be disrespectful and mouthy to their dad and my sister so I know at times things get a little rowdy. Today is a day that they all use to clean and work on projects. The girls (I keep them every other week) were particularly irritating and didn't want to do anything. I never have this problem with them and my sister had surgery earlier this week so I took it upon myself to try to turn the table and get cooperation. Well I am not a screamer and I have a different way obviously of parenting (I have to remember I am not their parents) and my help wasn't taken as helpful I guess so I was shooed away from their room. So I began to vacuum the wood floor upset already even though I didn't need to be. But I could hear my sister and her husband screaming their demands and disapproval to the girls and I couldn't stop the anxiety from taking over. I turned off the vacuum and went outside because I was pouring tears and just felt my whole body so uneasy. My sister came out and said are you trying to get some peace and quiet and then noticed I was uncontrollably crying. She immediately said you don't have to vacuum. I told her I liked vacuuming and then she said it's ok Murrey was just telling Miller to brush her hair and she doesn't like it and then went back inside. She doesn't understand why I lose control and for me it's not ok. It's taken me roughly an hour to get myself calm and I feel like I have run a marathon. I just prayed and swayed...Please Lord help me to not have this reaction in front of all these family members. It is embarrassing and I don't like it at all. I really hate that I am not in control. It scares the kids. It confuses my sister and her husband. I just want to go to my room and close the door and shut down...but I am not home. This too shall pass.
I hate that I can leave a positive post one day and then am miserable and need to let it out (though it may be negative) the next day. My moods and emotions go from one extreme to the other even though I see my Psychiatrist every 2 months and am medicated with what has worked the best so far. I still can't control it at times. Ughhhh anger/frustration/depression/feeling alone/feeling like nobody...and I think to myself why do I let something so simple so nothing sometimes to affect me. It just does...whether I am aware or do things to prevent or control it...whether I try coping skills or positive self talk. I can just end up in a blubbering mess of lonely tears. Here is an example: My dad is finally selling an older model Monte Carlo that sits under the two car carport and never moves to my nephew. I was shocked and utterly excited. I was so happy that nose I could park under the carport because the birds use my car as a bullseye or their lavatory in other words and I have difficulty finding the energy or coordination to wash it myself...oh and I am unemployed and broke always (still working diligently on disability). That means no car wash places for me. Ok back again to the parking situation. If you don't already know let me explain that I live with my dad while I am going through the disability process. Anyways, I was so thrilled that I could park under cover. My step mom smiled and spoke loudly to my father (he can't hear a thing) about my excitement and he promptly said noooo you put your suv under there. My stepmom has 2 vehicles but doesn't use her suv. His reaction hit me like a ton of bricks which I think is crazy on my part. I immediately welled up with tears and felt so alone so invisible. I finished cleaning the dishes in the kitchen where I stood and then scurried to my bed to log on and release this yucky. I'm probably taking a nap in a few moments to refuel. Again this is me using my blog as purgatory. Maybe in a couple of hours I will do something fun.
Tonight I went to a special stroke support meeting where a stroke trained Neurolgist was our guest speaker. Even after all I have read and been through it was really an enlightening experience. As I listened to some statistics it made me feel so sad inside. I truly wanted to cry for myself and the many many thousands that experience stroke each year. That doesn't even include the many many thousands who are just affected by someone they know or love having a stroke. Did you know that 795,000 Americans will have a new or recurrent stroke this year. This only includes Americans!!!! Stroke is the #5 cause of death in the US, killing more than 133,000 per year. That is 1 in 20 deaths. More than 690,000 per year of US strokes are caused when a clot cuts off blood flow to a part of the brain. IV-alteplase can be administered in select patients within 4.5 hours of stroke onset. Mechanical thrombectomy (much newer and the newest research and procedure) can be performed up to 24 hours after stroke begins in select patients. Learn and share the warning signs of strokes (not all but most kinds fit this). Spot a stroke F.A.S.T. F~face drooping...A~arm weakness...S~speech difficulty...T~time to call 911. Don't wait remember the T.
I encourage you to visit www.stroke.org and click Menu and then Understand Stroke. Be sure to open all the blue subjects with arrows beside them and refresh what you probably have read before. Even though, it is still staggering. Like I said before these statistics are only for the US. Well I know so many of you who are from other countries. The magnitude of this realization is unexplainable for me. The impact is mind blowing. In the US, stroke is #5 cause of death and #1 cause of long term disability. Speechless.
I had several questions for the Neurologist concerning my own type of stroke in the posterior region of brain blood flow. I had a cerebellar stroke (2% of all strokes and probably less % for mine which was bilateral). Just as I have found within the medical community the cerebellum is the least known about part of the brain. For more than 20 years there has been much research into the higher learning affects cerebellar damage can cause. I was diagnosed with Cerebellar Cognitive Affective Syndrome during my second year post stroke by my Neuropsychologist. This syndrome is a much studied and debated subject. Many physicians are either unaware of new findings or fail to accept and follow the progression of research. This makes it really difficult for someone like me to get consistent up to date care...the Neurologist acknowledged my concern as truth. I was emotionally overwhelmed at the moment. Validation is life changing sometimes for a stroke survivor. I personally thanked him after the seminar and he gave me some Medical contacts that could be truly beneficial for my issues and background. This was a most informative, and truthfully enlightening seminar. I just had to share.
It's been a different spring into summer this year. Things are just different. It's been a year since I moved from Nashville and away from who I thought I would be with forever at one time. I see my Psychiatrist every two months and tell him every time that my dreams haunt me. I dream about Adrian almost every night...not the "I want to be with you" dreams but dreams that don't feel good. I can't explain...My dreams can be scary real feeling since my stroke many times I have to wake up well before I realize it's not real. They can also color my mood for the day. I also have unavoidable thoughts of him constantly. Again not the "I want to be with you" thoughts but just in my mind thoughts. I physically try to stop them. My Dr. says it's called rumination and a part of my anxiety disorder. He told me when I get my disability and insurance happens we are going to get me into cognitive therapy which will help me cope better. I guess that is another thought that goes through my mind constantly...Will my disability hearing be positive. I am scared. I hate to admit that but I am. Today I started watching my two nieces every other week for the summer. They are good kids and if they get a little rowdy I just talk to them about how it affects me and they are always eager to make the moment better. I have to admit though that even though we relaxed and had a calm day I am still blah. It means that I feel more exhausted than usual, have a headache, stuttering, dizzy, just good old brain fog and have had to lay down just to rest...still need dinner and meds and getting ready for bedtime before sleeping. It's been super hot this year...It seems more hot than I remember for a good while. My body does not like it. Fibromyalgia...heat, stress, weather, getting sick, and a plethora of other things can set off a flare. For those that have this....My shoulders, neck, back, hips, elbows, knees, stomach are all unhappy the past few days. I am tired of my whining lol...oh well at least my blog doesn't have to be for everyone sometimes just for me. I have fallen down the stairs again...but I have to do laundry (it's downstairs) lol thankfully no tumbling just missed a step. One great thing is that I have slept through the night for the past 4 days! This is a fantastic achievement because my sleep cycle has been way off for 6 months now. I'm stoked! It should only get better from here since I will need to be ready for the girls by 7:30am at least every other week. This blog is so random...My apologies. I've had so much on my mind lately and been a bit moody so I just have to let it out. My dad has to get a biopsy on his lung (a spot on) next week. Already had a PET scan and it's suspicious. The wonderful thing is that he hasn't smoked in 5-6 days! That is major because he has smoked since he was a teen and he just turned 75...even after a heart attack and 5 bypasses he still wouldn't quit. I'm praying this will last. Not only does my father need a biopsy for lung cancer but also has COPD now and is on oxygen. I'm trying to tell him and myself that there is nothing we can do right now and worry will be useless but that is easier said than done. I just pray. As for my summer may I find some time and energy for fun...make some new memories.
Boy, I have read back through some of my replies lately and wow I have had a lot to say. I am going to call it passionate response. I am so happy that I have an outlet with Strokenet and now another with my local stroke group. I have a lot to say and have a lot of thoughts that I can be really passionate about. I sometimes want to do more...educate others...help improve medical therapies...bring light to subjects about stroke that seem to be put on the back burner. I know I am extra passionate about the type of stroke I had. Also that I am 45 (42 when I stroked) and looked over because of my age which played a part in not being diagnosed until 2 months later. Statistics say that in a research group of 2000 consecutive cerebellar stroke patients (1987) had a mortality rate (23%) almost twice that of cerebral strokes (12.5%) and brainstem strokes (17%). These of course may be different now 20 years later. But it shows you that cerebellar stroke is no joke. Part of the problem is the difference in cerebellar stroke symptoms and the problem with missed diagnosis. I think about this when I think back to my missed diagnosis. I was sent home in less than 48 hours of having a massive stroke. In cerebellar stroke the days after the stroke (1st week) are the most dangerous. The swelling in this area due to tissue death and damage can lead to serious and deadly impacts. Swelling and edema in this area can lead to herniation of the cerebellar brain tissue up or down, can obstruct the 4th ventricle causing direct brainstem compression. This can lead to deadly herniation of the cerebellar tonsils into the foramen Magnus. All in all this can lead to death. Phew...I need to shop. 😡
The last 2-2.5 months I've been dealing with a throat issue. Chronic hoarseness, ear pain, and my throat stinging. A couple of weeks ago I went to an ENT who looked in my throat and at my vocal cords. He seems to think my vocal cords have thrush from my asthma inhaler so he had me take a 2 week course of Diflucan. A month ago I filled out paperwork for financial assistance at Vanderbilt for this procedure and any ongoing appointments or therapy I may have. I got the letter today telling me I have been denied. I had a pretty quick response and welled up with tears. This just reminds me that I have no insurance because I can't work and am still going through the disability process. I've been dealing with some depression over the past 4 months and I am trying to get on top of it. Today just hit the wrong way and makes me feel more depressed and upset. I feel like I am feeling sorry for myself or whining. It's just been such a long disability process and I have been through some pretty rough things the past year. It adds up....especially since the stroke. I just feel so tired. I'm sleeping more and more I think. Just want to be asleep. So that's where I am today and I'm hoping I can turn these feelings around soon.
I did something I wish I had not yesterday. It started with a Dr. appointment to an ENT due to chronic hoarseness, ear, and throat pain I have been having since January. Seems my asthma inhaler (has a steroid in it) has caused a yeast infection(thrush) on my vocal cords and folds and will probably only need a script for Diflucan. Then I got in my car and drove to where I used to live last year. I got out of the car...knocked on the door...and Adrian answered and invited me in. For those of you that don't know Adrian was the man I had lived with and loved for 10 years until May 18, 2017. Adrian began seeing a girl 30 years his junior, I freaked and had moved out that same week, the next day she moved in, and I have been recovering and mourning since. Today I know in my heart that it is over for the best. But I Drove there. We chatted for about 15 minutes and I said goodbye and left. I have been in a state of confusion since. Emotions washing over me. I don't know why I went. I feel like I have walked backwards a bit. This life is about me...that is where I have wanted it since I left. My insides are nauseous. I am disappointed in myself. I am worthy of someone truly loving me. I deserve no less. I can make it by myself. I should love me first. I know these realities are true even if I am telling myself again.
I also noticed somethings today not connected wit the words above. I am dizzy...all the time...I have learned very well how to mask this even to myself. I go into a store and I am working non stop to go through the motions and never acknowledging that I am dizzy. It exhausts me...it changes me for the rest of my day. I can honestly feel not dizzy when I am sitting in a quiet familiar place or lying down. I can't look up, around, far away, down, at moving people...things, lights flickering or moving, walk up or down any stairs alternating feet or without holding a handrail, be or walk in open spaces or large spaces and many many more without vertigo/dizziness, sometimes nausea, many times wit an altered since of stability, feeling my brain slow, lull, get heavier as well as my eyes. It's so constant that I have learned over time how to cope and get through it. It's not the same plane I used to be on. It's alternate, changed, hard work... Depressing. I can't change it. I can't avoid it. I can't escape it. I have learned to be in it. For my sanity as well as for others. I felt it today. It's the loneliest feeling...like I'm separated from my world by glass. I can see and sense all past the glass but no one else can see in. Alone is scary. Do any of you ever feel this disconnect or something similar?
I am sick yet again. In the hospital for 4 days at New Years which took me a month to regain my strength. (Steroids during) My back went out in February and on steroids again. Diagnosed with Diabetes 2 during hospital stay. Chronic harshness, throat pain and ear ache but not really sick since mid February. I have to see an ENT on the 23rd to figure out what's wrong. Then Sunday get an extremely sore throat and coughing, now stuffy nose, ear aches, headache, phlegm . I feel like poop. Another round of steroids which will make my blood sugar out of site once again. I am just whining but dang. What is happening?
It's been a while since I've written a blog and been really active on the site. First of all I miss those of you I know here but I have been sort of recovering and regrouping after leaving Adrian and moving back into my Dad's house. There has been a lot of positive...my anxiety has been less, I have my own transportation, I am still waiting for the second round of disability decisions, I am close to family, my daughter is doing wonderful and is so good to me sending me $50 every other week to help me, I've been making my own choices, I even have my sleep so much better now getting to bed between 8:30 and 10. So many good things. Something has happened though 4 different times which I need to get off my chest. My Dad and I get along most of the time but he is a huge trigger at times and can evoke a pretty big anxiety attack in me at times. Once because he told me not to put my hair up in a pony tail anymore that my step mom had cut my hair and "the pony tail looked like *beep*". It was an immediate trigger and I couldn't stop the attack. I finally got to my room took my anxiety medication and finally fell asleep. A second time was him telling me "If that guy called right now I bet you would go back to him because you are stupid.". He wouldn't stop even when I begged him. I ended up half blindly driving to where my step mom is staying at my Grandmother's so I could calm down. Both of the other 2 times have been about my weight. I have gained 50 pounds since my stroke. I joined a gym a week ago so I can be healthier which hopefully will help my weight as well. He has called me fat, told me I don't care about how I look, told me he wouldn't leave me alone, to go ahead and cry until I can't cry anymore because he doesn't care, more times that I am stupid. I can't stay at the house when he gets like that because he won't stop and the anxiety attack just gets worse and worse. Each time I have gone to my Grandmother's...each time right in the middle of a pretty severe anxiety attack. It's wearing on me. I find myself just silent and to myself more and more. My Psychiatrist is concerned...he made the statement "You fell from the frying pan onto the stove.". He shows more compassion and care than any Doctor I have ever had and we talk about what my future plans are and he encourages me. I just needed to get this off my chest. My hope is that in the future I will live by myself and make all my choices and be free of the hot spots. It won't be perfect but I think I would feel so much better.
Today I am officially a member of a health club!! My daughter is the best! I went into this big bright workout space and toured Planet Fitness. I go back at 1:00 today to go over what I am looking for and to make goals. I can't wait! This will give me several things. 1st and foremost working on getting healthier and with that I hope to lose the weight I have put on since the stroke and maybe even more. This is also a way for me to spend some of my day. I need so much to 'get out'. I have time everyday to work on my goals and just enjoy a new atmosphere all at the same time. I am so excited I just wanted to share!
I am here forcing myself to write because I just haven't felt like it but it is good. The last month has been extraordinarily hard and lonely. It's funny how a person really takes on a companion's or spouse's likes and dislikes. Ok at least for me it is. I have pondered on who is Tracy many times this month and what do I like and what do I not like. For the most part I can tell that my partner and my daughter were my big triggers for panic attacks. I have really only had 2 which is better than it has been. My obsessive/compulsive thoughts are less than before I left. I still have fatigue, night time vision problems, a slight stutter, some balance issues, and headaches.
So I will talk about the bad first. Before I moved from my home and from Adrian, my days were unpredictable and I wondered if we were good. I was paranoid about what he did all the time. I was compulsive, my moods were so up and down. I do know I loved Adrian...and I still do. Unfortunately, it doesn't just stop...go away. The first week of staying with my father were excruciating. Everything I had known and depended on everyday was gone, changed, instantly not the same. I felt odd, like I was in another body...all I could do was feel pain and cry. I contemplated calling him, pleading with him to go back to what we knew...what I knew. This was so difficult not to do. My emotional lability was affected more than ever, sometimes every minute. I think that is how I took steps too...it was minute by minute...hour by hour...day by day. I thought of nothing else. No car, living back with my father, alone, no hope or vision of the future.
Day by day I began to do things. Cook my dinner, wash my clothes, make my bed, decorate my planner, and I began to have a bit of a routine. There were less bouts of crying and hopelessness though this still happened every day. My cat was scared being in a new place and I could barely find her...she would hide. I missed her going to sleep with me each night and generally being there with me. This too got better...she finally felt she had 2 rooms she could feel safe in..the formal livingroom and my bedroom. Then one morning I woke with her laying sleeping by my head. I really almost cried. I still didn't have my own transportation for the first 3 and half weeks. My sister was so wonderful to let me take her 2nd car that she didn't use as my own. It was a nice SUV but had sat for about a year and it had problems now. My mom had it towed to her mechanic and he began working on it until finally one day my mom and step dad surprised me with it. Wow what a day! To feel a kind of freedom for myself meant so much!
I drove for two days before it broke down again and back to the mechanic it went. My mom and step dad were paying to have this vehicle fixed safe for me. I am truly blessed that I came here with 0 (NOTHING) and no way of attaining funds for myself. What a wonderful family I really do have...a place to live because of my father, a car because of my sister, and a working car and even some spending money because of my mom and step dad. I sat back and thought about each thing and how blessed I really am. I am still lonely and it feels hollow. I probably call my mother and step mother more times per week than any person should lol. So slowly and carefully I am emerging...each day is a little better. I am trying to choose the positive things I remember about Adrian and I. It seems like it would be so much easier to just forget everything but after ten years I don't think you can.
"Tis better to have loved and lost than never to have loved at all." Alfred Lord Tennyson
Peering out from the darkness, the light grows stronger.
Reaching out to feel it's warmth.
My skin begins to glow.
First, my my arm like a golden diamond with a fire in it's belly.
The velvet light and warmth creeps further up my body until it envelopes all of me.
I feel weightless, like my body is lifted by the sun's arms.
Lifting my head, I drink in all of it's energy.
I can take a clear deep breath and the light fills every crevice of my being.
Slowly rising, burning brighter. Higher and higher.
I feel the rays beaming back out into the light.
My mouth falls open to release the glorious energy.
I am the diamond with my belly burning bright with fire.
Reaching out to lighten all the shady corners.
This is my blessing.