HostTracy

Staff - Stroke Support
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  1. HostTracy

    Happy Valentine's Day... I have missed so many here.

    By HostTracy,


    Happy Valentine's 2023
    It is nice to see the blogs back up! I have been quiet and to myself for quite a while now. I sure miss everyone so much. It has been much needed R&R for me and I just texted Dottie tonight that I am going to try and visit chat soon. Wow, it has been so very long since I have written a blog. I'm sure a lot has happened for everyone. For me, I'm just trying to truly take care of myself and to find positive ways to reduce my stress. Since May 23rd last year, I have been on a very exciting journey! With my Neurologist's insight, I made a huge decision. I had a cryptogenic stroke, so no cause found and in that case you need to really adjust all your modifiable things to be as positive as you can and to prevent another stroke. I had addressed every risk up until that point except my weight. My body, endurance and other issues due to the stroke have made it very difficult for me to lose weight. I decided last year, that I would have a gastric bypass for my health! So May 23rd, 2022... I did just that. My highest weight was 284 and my surgery weight was 263. Today, Febraury 14th, I am 160 lbs!!!! The goal was to increase my lifespan, decrease my risks and to really put my health first. I have already attained that goal so every pound now is icing on the cake (sugar free ofcourse). I was diagnosed with Type 2 Diabetes Dec of 2018 and my A1C was 8.4 the day of surgery. The last time this was tested (about 4 months ago) my A1C was down to 5.4 and I know it is even lower today. I take 0 meds for Diabetes! My sugars are phenominal! My blood pressure med was halfed last month! I no longer take Nuedexta for PBA (I can't take it anymore but I am doing ok. One less drug!). In my mind I was hoping for some improvement of my stroke deficits. I knew better, and after 7.5 years I still am as strokey as I was before the surgery. I can move easier though, with less pain (which is huge)!  I am better at coping with my deficits. I do still have PBA, central vertigo, and good and not as good days, still exhausted, still have ataxia, still get super "strokey" at night or when i have excess stress or anxiety, still have severe anxiety with panic attacks and off/on depression. My body's ability to move better, easier is so big though and I am so happy! I'm still on my losing phase as of now. We will see what I finally get down to. I've been doing youtube workouts that are not tough on my knees and also take into consideration my fatigue, disequalibrium, ROM, and are modifiable to what I need. I try to do something every day for my body. There are weird things that my mind doesn't reconcile easily like realizing how I can fit into sizes. When I hold up a piece of clothing I say to myself "I'll never fit into that". Shockingly, many times I do and could fit smaller! I am sure over time this will be more easy for me to recognize. OK, there are things that go along with rapid large weight loss... lose skin, deflated looonnnnggg boobs, rash under my (panicula-FUPA-belly apron as they call it) that I have to keep vigilant about. I'm not complaining at all though. Loose wrinkly skin, long defalted boobs & a rash is nothing. I have been through so much worse and my health is so much better!!!! Today, I am working to psycologically and mentally get to my best me. Part of that has been a need to go within and be present with myself, rest, heal and concentrate on what is the best for me right now. I am learning a lot about me. Getting in touch with my inner self, past trauma, and learning to reach for my best. Making ME a priority! I hope everyone that reads this can get something positive from it. I am learning who I am, what I like, what I don't like, healthy boundaries, and to put me first. I can't express that enough! Put you first. It is a must. You will be so much more for others when you put you first. You deserve it! All my love, blessings and positive vibes!
  2. HostTracy

    Time Is Flying

    By HostTracy,


    Blog
    I'm not sura about you but my year is flying by! I w onder if it will continue to feel this way because it has been different for a while. Since I had my stroke time has seemed slower than usual up until this past year. It's possible my clock is catching up 🙂 . It will be New Year's before I know it. This year I have been trying hard to improve on all my improvements or at least the ones that have always normalized me. The simple things: chores, schedules, regulating my energy output better to serve my available energy, relaxing/meditating, planning small things, recognizing my anxiety triggers, pushing myself to continue down some paths that will help me physically in the long run, establish some if any kind of routie (very difficult for me), etc. I suppose I am tweaking things a bit. Hopefully, improving the outcomes. 
     
    I am proud to say that my A1C is going in the right direction (3 month sugar ave./diabetes), my cholesterol is completely ideal, all other blood tests are all looking great. I've been really trying hard to not cheat when it comes to eating for diabetes and this is helping a lot! My A1C went down fron 8.2 to 6.4 which is super!!! Along with that is a 20 lb loss which is wonderful. I have been working on getting things around me in good order (so not perfect!). I am grateful for the opportunity and energy to do so. I began a new adventure this week and I am going to have to learn how much I can do within my energy range. I started to do internet grocery shops for people via Instacart. 
     
    It's been over 6 years since I have "earned" any money and 2 days ago I earned $30.10!!!! Seems like nothing but to me this is huge! I've already learned a few things: I did too much Wednesday (3 shops and still very new to me/learning which is exhausting), it felt really good completing a shop, and I can do this even if limited. So change of plans: for now until I feel confident and able to try to add shops just allow one per day. That way I am learning, building confidence, building stamina and reducing any triggering pressure. I feel good about it!
     
    A lot has happened the past 4 months  and I have been a bit beside myself. Sometimes life just needs to teach you some lessons in how to handle certain life changes. Learn to be grateful in what you have, learn to accept positives that come towards you anf to let go, surrender, give it to God, and trust God has you. I never knew how much of a control issue I have had through the years... a bunch! I have felt the need to control anything and everything having to do with my emotions. I'm learning more today that I have very little ultimate control anf releasing my energy used to "be in control" is absolutely freeing and healing. Seems all the things in life I tried to control were never good for me in the long run. My new mantra "Let It Go! Give It to God!".
     
    I pray that all of you have been well and I am so happy to be able to post again. I have missed it! Thank you so much Missy! Here's to a happy, healthy two months of holidays!
     
  3. HostTracy
    I'm publishing this today... seems I forgot to back in 2021! Hopefully, it is a full thought lol. It was over a year and a half ago!
     
    About a month ago, I decided to find a way to reach my 1st real boyfriend. He truly is my very 1st love and has never been far from my heart no matter what stage of life I was or am in. I spent $.99 cents to look up information about his brother's. I couldn't find anything about Richard (my 1st love) but I lucked out and found a number that I hoped would reach his brother Jeff. I called left a message to him and his wife and left my number and after almost forgetting my maiden name (Logue). He probably would have no idea who I was if I left that out. I wasn't sure that I called his actual number but believe it or he called late that evening. Jeff is my age and his brother Richard (my past bf) is a year older than me so he went with us often. I gave him my # to pass to Richard (that way Richard could decide whether to get in touch with me or not). Ten years ago, he had somehow found my work # and just called me one day out of nowhere. He said he wanted to talk to me but he wanted to in person. I was very busy with life at the time and I never called back to plan on meeting him. I have been curious ever since. A month ago, I decided "well I'm single, and I suppose my life has put me in a place where I want to make connections with others I care for in life. When we parted ways, we had been going through some really grown up issues for 2 teens (16 & 17). I truly have only prayed for the best in his life. I 100% still do. We have talked on the phone 4 times, just about ongoing emotional stuff we never had a chance to heal. Come to find out, at my great surprise, is that we have both felt the same draw. We both have dreamt of each other many many times. Even while I was married and he has been married since 2006. He is happy. I found a picture of him and his wife today online (OK so my curiosity got the best of me). He is so handsome and his wife is so beautiful. He is doing very well, lives in Fort Worth, TX. He has a super great job, his wife stays home at the moment, and they have about a 4000 square foot new house! He works for the US Treasury. I am so very happy for him and Dana. Weird stuff though, I have been crying so hard tonight. Heartfelt sad cries. I'm not even sure for what reason. I know we both have gone on with our lives and he is so blessed. I should be so happy. I mean I am but for some reason I can't stop crying. I don't know if I for some reason I thought maybe it is possible. I mean together. I 100% no better and it is not how I want to react. He is happily married in a very good place in life. Our realization that we both still hold each other in our hearts sort of floored me a bit. I never expected that truth to exist on his part. It has been cathartic connecting with him; but, it feels so raw like we are teens again. I think I am looking forward to my therapy tomorrow. I need to work on processing these emotions. 
  4. HostTracy
    I want to start by saying I need and I miss my friends and support here at Strokenet. It's been somewhat of a tough year for me I suppose emotionally, mentally and physically. I know I'm not alone when I say "I'm so tired". Man, am I so tired! I'm not even sure what was going on in my life when I was more active in the forums and in my blogs... I'll have to go back and pay attention to when it started to fade to catch up on where I am now (well what's been happening since then). 
     
    No one knows that I have started tons of blogs and it ended up floating into the blog beyond lol. Trying to maintain my thoughts can be pretty hard these days and as many of you know I'm not one for quick updates... More like small book updates. I should really work on that and maybe have better success!
     
    So, this has been a year like no other for me anyways. I realize that our history books will change soon and in 50 years everyone will be talking about when the new virus hit the world. I think back to when my history classes talked about such events in the past before me and I realize how much I never thought I would ever live during "an event". My perspective has really changed since before my stroke and I am less afraid of a lot of things. I'm not sure "afraid" is the correct word. I think maybe I just am more at peace with the finality of life and death. I know, sounds pretty morbid 😁 but I think honestly too... living in less fear is freeing and I enjoy it more.
     
    On the other hand, my cognitive lapses just seem to affect me more and more. That definitely gets in my way! So, I'll put a disclaimer here. I hope this blog is somewhat fluid and others can make sense of it because it is possible I might wander here and there lol. I am about to take a mental break and will start where I left off hopefully. (Literally-a necessary nap is coming). Be back soon!
  5. HostTracy
    I'm sitting here in my living room listening to the birds chirping as the sun rises (its 5:30am). This blog is me getting stuff off my chest. I have to release this "stuff" sometimes... I'm not looking for answers, reactions or sympathy BTW I just hold a lot of stuff in. Also, I don't have a lot of people I can let it all out to (for lack of the ability to get it out or maybe lack of motivation and I get on my own nerves so I can only imagine that I do the same for others and I don't want that). 
     
    I apologize in advance... It seems many times when I write a blog or at least it feels this way, it is me pouring out a bunch of junk that is swirling around in my head. 
     
    First and foremost I am very grateful to be alive, grateful for all the blessings in my life, grateful for every one of you here at Strokenetwork, grateful for the opportunities that have found their way to me... In general I am grateful, blessed and thankful every new day I wake up and live life. Second, I am not seeking answers... Just feeling some weight that i need to unload. Third... Anyone and everyone is welcome to comment (I love all of you and God bless you if you read the whole thing lol).
     
    Sleep... this is a daily struggle for me in a way that most will not understand and that's ok. I'm up bright and early this morning and thankfully have been able to rest my body and mind over the last 24 hours. For the past five and a half years (well 6 and a half because i had horrible insomnia the year before my stroke) I have struggled with sleep issues in one form or another. I can't tell you the enormous effort I have put into trying to navigate, fix, and explain this. I have kept months of very in depth sleep journals, tried so many things either from a physician, a sleep specialist, friends, family, and my own research yet I am still in the midst of my bodies ability to regulate my sleep failing me. You see, this "thing" is not a simple challenge. It's not about making habits, sleep hygeine, routine, etc. At least not in the way that 99% of people will understand. The day I had my stroke was the beginning of what I call sleep turmoil. (Insomnia is one thing like before my stroke but turmoil is another... something that has caused me a lot of distress). My Psychiatrist and I have been trying to work together with my other doctors to make sense of it and to hopefully find beneficial answers.
     
    OK lets get a little background. On July 5, 2015 I had a massive bilateral cerebellar stroke in the PICA region. It is one of the rarest phenomenon by far in stroke understandng. In other words I am a unicorn. Hard to find facts, hard to find help, hard to find others like me, hard to find answers, hard to understand (most Doctors and yes even Neurologists know very little about my kind of stroke). To say this has been frustrating is a huge understatement. To tell you everything that I experience or have experienced over the past five and a half years would take me forever. I don't even understand a lot of it. Heck even my Doctors don't. The first two years after my stroke, I slept an enormous amount every day. Neuro fatigue, post stroke fatigue and my brain working hard to repair the damage was debilitating and still is at times. Then my sleep started to change... Imagine sleep cycle being elliptical and the good part was the small end and the not so good part was the big end. That is me. From what we (myself and my Doctors) can gather is that my brain and my circadian rythym just do not work properly. I now have many defecits that involve executive function, cognitive function, higher brain function and it is a struggle. Trying to explain to someone else that my brain is damaged and therefore does not work properly seems simple but in truth it is almost impossible. For many stroke survivors, physical defecits are very often present and cognitive defecits thankfully do not happen to everyone or they get much better. (Please don't take this next sentence personally. It is direct and seems cruel but it isn't in my opinion but can help to evoke a bit of understanding). So when I say that my brain is damaged and I have defecits... It means that my brain can no longer do some of the things I used to do without thinking. This is not for lack of therapy, intervention, motivation, etc. So here is my harsh example and I am so sorry in advance. 
     
    Scenario:  I explain that I can't get a handle on my sleep. It is affecting lots of important aspects in my life. I miss appointments because my body sometimes won't sleep until it wants to. I miss alarms I set for everything I do because sometimes I sleep so hard that it doesn't wake me up. I can go on and on. The person I am talking to also had a stroke but experiences different defecits than me (more physically noticeable defecits). They say "Tracy try doing this ____. Tracy follow a schedule. Tracy....and 100 other suggestions.". No matter if I try to explain the gravity of my issues it doesn't compute. I can't seems to mean I am not trying enough. I can control this. So my answer is "______ move your right hand. (this person has right side paralysis or defecits). "I can't move my right hand... it no longer moves due to my stroke". What if I said in response "____ try harder... you are not trying hard enough. Try doing this ______. If you work on it over and over and do the right things then you will move it.". Think about that. Not everyone will have a aha moment but some of you will feel the aha moment immediately. It's like having a mental illness or having comprehension problems compared to having a cast on your arm because it is broke or having stitches to close a laceration. Have you ever heard of "Seeing is believing."? This is what I experience almost every day. From all walks of life. No one ever intending to affect me in a negative way... but I am. It weighs on me heavily. Not only do I feel like a failure at times but I feel like others may see me this way. It's never an excuse but I carry emotional pain from these type of interactions. I don't know how to get past this. I'm already a hermit. I am thankful that I speak to my therapist every week. It's freaking hard and sometimes I am swimming in the toxic feelings of my own short comings and the feelings that my brain doesn't freaking let go of. Like this morning. it is very appropriate that it is raining.... I don't feel alone.
     
    Depression/Anxity: Now this has been an up and down ride for me for so long and after my stroke it is worse than ever. Sometimes, my mind is light and I feel very blessed at so much around me. Regardless, I am grateful every day... even when it rains. Other times, I get pulled down into a vortex of sorts... dark, sad, exhausted, emotionally a mess, in pain, shameful, hopeless, and it is hard for me to feel good about anything. I've been in therapy long enough to recognize these signs and to reach out and ask for help. I think I am medicated in every way I can be to help with this. Without it, I don't know if I could get out of the vortex. My Psychiatrist and I have worked very hard over many years to find the most helpful combination. Part of this is PBA (Psuedobulbar Affect) or emotional lability to some. It is brain damage caused by the stroke and for me it never went away. Thankfully, most people get so much better or 100% better with time. I am on medication specifically for this as well. I also now have extreme anxiety with panic attacks. Many will relate to this. It is a daily struggle to keep my anxiety at bay and I have to take meds to help with this too. Without meds I was having multiple panic attacks every day and now I still have a few each week but with the help of meds and the many coping techniques that I have learned... I feel at ease more than not. Anyways, I am a perfect speciman for a Psychiatrist (my Psychiatrist is a life saver for me and I am so thankful for him). On a happier note I have gone from crying to smiling and the rain stopped! 
     
    I hate feeling so negative all the time. In the same breath though, I am full of positivity. Talk about irony. I suppose I am in my head way too much all the time... is it bad to say I wish I had my daughter in the closet....ready to come out and spend time with me and pulling me out of my own thoughts at times and also equally ready to go back into the closet when I need to rest and have quiet. LOL ok I am not crazy... LOL again at least not that crazy. I miss Hailey and we haven't spent time together in quite a while. Today, her and I truly enjoy our time together and we have a very strong bond. It's not always been like that. I just take it all in and cherish every bit of time we are together. I think it is time for a call today. Maybe time for a visit. Maybe even a time for a sleepover!
     
    I think I will stop here. I had so much more I needed to dump but it seems just letting some things go is very therapeutic and I feel better. Haha I can hear a rooster crowing and I live in town. He seems to be an hour late (maybe he is not used to the time change yet). I'm going to make some breakfast, take my am meds, snuggle with the kitties and watch a good movie I think. 
     
    I ❤️ love all of you! Thank you for all you do!
  6. HostTracy
    Time has passed well slowly or is it rather quickly...hmm times are confusing these days. I suppose that question depends on the day. It's not hard to recognize that the world is a bit out of kilter this year and I hope going forward we as people take the best we can from it. Finding peace has never started out being calm most times. Change is hard but it is a good teacher or reminder. I suppose as for me, I am oddly calm inside...watching the world around me in a kind of slow motion...observing. A weird way to think about it but I am content to stay close to my inner peace (for sanity's sake lol). I suppose I am grateful that today I am in a more realistic mind frame than I used to be. I realize there are so many things I am not in control of and choose to not let them weigh heavy on my soul. I'm not afraid of dying (even that sounds weird to myself). Also, my heart loves people (of every race, culture,etc., etc.)...all people though I am absolutely a hermit haha (I just feel better alone, inside, with my Kitty and new baby kitty Bella). Outside is too...too much for my brain and it's now outside of my comfort zone. How ironic, I was the absolute social butterfly before stroke and now I am 100% the opposite. I'm ok with me though. Probably much better with myself than others are with me. It's my goal and my Neurologist's and Psychiatrist's orders (remove all that stresses you for your health). I have found out that people stress me more than most anything so what is the answer make my home a haven. 🙂 for me!
     
    So, I have been quite relaxed during lockdown moments. It's my jam!!!! I've kept myself busy crafting and continuing my painting, focusing on keeping my bird feeders full so I have happy birds in my back yard, spoiling my fur babies, catching up on some Netflix, trying to learn new tricks to help my sleep normalize (not always successful), and planning a bunch of fall DIY's. These are things that make me feel good inside. Still pressing forward, trying new things, practicing things I already know, trying my best at increasing the good feels. I'm winning more than losing these days and I'll take it! I'm not too hard on myself and allow mistakes. If I fall off I just get back on that pony and keep on riding. I try to ignore those who judge ignorently (ok without knowledge) me and what I do or don't do. I'm getting pretty darn good at knowing my normal and I am good with myself. I know how much I do and how much effort I put into my everything and if someone doesn't understand that well it's their issue (they probably worry about it more than I ever do so I'm glad I'm not them). Well that was the long way of saying...I like me and in all truth that is the most imortant thing for me and hopefully for each person to like themselves. Ok...off my podium now lol.
     
    It has been a hot, humid August so far. Ick the air is thick!!!! Thank you Lord for my trusty A/C! 🙏 I think most of the chilfdren in my area are going back to physical school. I sure hope so because even though I thought summer break could not get here quick enough I looked forward to starting a fresh new year each year. I'm so glad I had that without fail and I bet in the long run most kids will agree. I have already started my fall DIY's and changed some summer decor to fall...getting ahead of the curve. I look forward to fall leaves, cool wind, sweater weather (not cold!), pumkins, mums, and all the coziness of fall. If it were up to me it would be spring and fall all year with no humidity and no temperatures below 45ish lol. Nature does what she wants though and I find myself lucky to get a taste of all 4 seasons.
     
    I am starting on a new part of my journey soon in two ways. First I'm having varicose vein therapy so I am excited for more comfort and well prettier legs. I'm not vain but it's been a while lol. Also, I decided to go to a weight loss surgery consultation. This is a big step for me. I find that I can't get moving enough to lose weight and it is creeping up slowly oz. by oz. Since they never figured out why I had my stroke, I have to think about all the factors I can change to help reduce reoccurance. Weight has been my foe though I have conquered most other risks. My Neurologist suggested last year that I think about it and I quickly said "absolutely no". I feel ready...ready to embrace change and face my fears and believe that I can accomplish it. So, fingers crossed I go the 2nd of September to my consult to truly explore all my options. I am hoping a few of you will cheer me on haha. I will keep you posted! Before I end I just want to say thank you to all who have been such wonderful friends and support here and for those who pay it forward to others. I'm not going anywhere I just wanted to say what I feel. I am a better me with you!
    Stay safe, wash your hands with soap and water, and wear a mask for the safety of others! 
  7. HostTracy
    It's been quite a while friends...since I have blogged. It's been a tough 6 months and I have struggled with depression and increased anxiety. I am very hopeful...little by little I feel better and I keep busy. Recently, I had an issue with a charge from Microsoft so I called and spoke with a gentleman who transferred me to Payments and billing. I talked to a nice young man named David. He had a pleasant accent, maybe British. I set about explaining my issue...this can be difficult for me and the person I am talking to because I have a lot of difficulty communicating clearly and calmly. So in the middle of a pretty difficult bit of stuttering I explained That I had a stroke 5 years ago and it is sometimes hard to get out what I'm trying to say but please be patient I would get it out. David said "I completely understand and I mean literally....I had a stroke 8 months ago". I was surprised but of course felt a kindred spirit as we talked for a moment. I asked him how he was doing and he told me he had lots of therapy at first and now is down to once per month. That he was very lucky and has had a wonderful recovery so far. He is still on disability but works as well for Microsoft. He said they had been wonderful at accomodating his needs and he was very thankful. David told me it may have been stress from the work he was doing at the time they weren't sure. After speaking and swapping stories we realized that both of us had been misdiagnosed during the acute phase. We were surprised at how similar our stories were and had a moment of mutual connection. David asked "May I know your age?" and after telling him I reciprocated the question. David was 23 when he had his stroke. Myself, I was 43 when I had my stroke. Even at my age they said over and over she is too young to have a stroke. That same reason was why David's stroke was not caught even though he had typical FAST signs. He had a cerebrum stroke on one side and that is what causes the FAST symptoms. I had a rare weird stroke that didn't fall into the FAST acronym but my age was also a deterrant to diagnosis. I told him his youth was such a great thing for his recovery and that I was so happy he was doing well. I had all but forgotten why I was speaking to him to begin with. There was a long silence and then David spoke saying "I do not want to start crying and I feel it coming so maybe we should talk again about business". I reassured him of course that is what we should do and thanked him for sharing his story with me.
    I realized while starting another blog that I never finished or posted this one. It's not complete but I'm leaving as is and posting anyways. I had forgotten this until I read it again!
     
  8. HostTracy
    What can I say... So far 2020 has been earth shaking. Let me warn you before reading: these are my thoughts, my experiences, my worries and where I find my mind these days. This is not meant to add to the fear and chaos or to bring a negative light toward anyone. My words come from me and if you are sensitive to hearing someone's honest, transparent and straightforward thoughts then this may not be for you. 
     
    I try to remember January. I don't remember what day I heard the news of a novel virus that shut down a large metropolitan city in China. I did ponder the fact but honestly not for long. I had been dealing with my own health issues and problems with illness (more than 1) that has been flaring my asthma. I think I have taken 3 steroid packs since the beginning of the year. 
     
    In February, I began to hear more and more about the novel virus now known as the 2019 novel Corona virus and now more the more familiar (name and possible illness) Covid-19 and
    SARS-CoV-2. I started to see signs of other countries developing cases and watched the worry of everyone about the virus spread and travel (on planes and those who had been to China). I still didn't feel immanent fear but some time during February this started to affect me more. 
     
    Then a F3 tornado slammed through Nashville. It was completely shocking and thankfully I now live about 45 minutes south. This tornado had torn through my old stomping grounds, within 1/4 mile from my previous home, ripping through the area I went to often for my groceries and many of the roads I took on a daily basis. I think maybe a week went by and then Nashville had its 1st case/s of Covid. Very close to home and where all of my Dr's are. 
     
    On March 6th I went to my local walk in clinic because I knew I was sick. Flu test, strep test and exam. Tests are negative and I was sent home with a steroid pack and told to use my nebulizer 4x/day for my asthma. Not feeling better I went to my PCP on Monday the 9th. No truly bad symptoms so I was told to continue with my steroid pak and nebulizer treatments. 2 days later I am much worse, heavy persistent cough, headache, sore throat, fever, etc. My PCP said come in and I went to his office in Brentwood. I thought I was to see my Dr. but instead saw a NP who gave me another round of tests for flu and strep. This visit was different than usual... I was immediately isolated and given a mask and everyone that saw me was fully dressed with PPE. I was also given a virus panel test (not Covid test) and a chest x-ray. I was sent home with the same course of treatment and told to self quarantine until I was called with my results. A week later I was told I only had a regular cold virus but it would be best if I continued to self isolate due to being hi risk for serious illness if I developed Covid. 
     
    So I hunkered down, stayed at home. Thankfully I had the where with all to go to Costco and Target for things I would need to not run out with. I actually got 1 of the last 4 Kirkland paper towels and the only toilet tissue left was a name brand (im cheap lol I use Kirkland), I got a 5 pack of Lysol wipes, eggs, milk, and a few other necessities. BTW Costco looked like a war zone. I just happened to get there about a day before all he** broke loose. I did find a large pack of toilet paper from Target. The next day every shelf in every store I went to was bare (necessities). I ran out of toilet paper yesterday thankfully I have a pack of baby wipes (don't flush these!). I did manage to get a large bag of Always descreet pads (totally am having leaks with every cough). 
     
    The next week I am no better, my nebulizer is mostly not helping and now I have new symptoms a horrible taste in my mouth every time I cough and a cough headache that is sharply painful with pressure at each temple and across my entire head. I feel this acute pain with every cough and a general headache while not coughing. So I called my PCP office. At the same time my phone starts doing this weird thing of not ringing when the Dr. calls but going directly to voice mail. So for about a week of trying to contact someone, anyone I was losing and just getting sicker. Finally, today the nurse used a phone from another office to call me after I frantically had explained my issues sick and dumb phone to a very nice lady involved in deciding if you need a covid test. She and her colleagues had all agreed that it doesn't sound like I need a test but needed immediate attention for what I was going through and she contacted my Dr office with an urgent message. Seems like my neb med was not what I should have been using. She sent the stronger prescription today. Let's see how it goes. 
     
    I've been watching the updates to this pandemic daily. I know I am "high risk" (asthma, high blood pressure, diabetes, and just that I have had a stroke). I sit and watch as stores close, schools close, supplies become scarce, other cities desperate for help and supplies. I feel like doom is coming and I have 0 ability to control it. I also watch political leaders in my own country (including the president) squabble and stumble to be the one with the "right" message for American citizens. My question is where do politics even fit into this reality. It sickens me and I do not feel positive or safe about any of their attempts to "lead". We are being told "We are all in this together" but I just don't feel it. I feel like the truth of this "thing" is teetering and could fall at any time and we have no idea what that means. 
     
    So I am trying to rest and feel better, use my new neb med and watch all the Netflix, Amazon, Hulu, Disney+ and whatever else I can find to keep my mind busy. I'm looking forward to hopefully feeling better soon and feeling like doing projects around the house. I want to plan more "normal" activities and take this time at home to make improvements. To feel active, to be able to enjoy the birds at my bird feeder, watch flowers do their colorful dance and make projects happen around the house inside or out that I have been wanting to do for a while. 
     
    I pray for everyone's safety and please take care of yourselves. 
  9. HostTracy

    It's Almost Christmas

    By HostTracy,

    It's hard to believe I've been absent from the forums for the past few months. I'm still hosting M & W chat in the afternoons. I enjoy giving time here at Strokenetwork. I have just needed a break. It's been a little long
    longer than I expected and may not be finished yet. SAD (Seasonal Affective Disorder) has been really tough this year, unfortunately. A few med changes and hopefully soon starting light therapy. I've been keeping to myself but also keeping busy with crafts and DIY stuff for Christmas. I haven't decorated for Christmas in a long while but this year I bought a tree. I have made 75% of the ornaments and more like 85% of other decor. Kitty and I are enjoying the evening ambiance of warm Christmas lights. I was not too sure how she would respond. The last tree I remember having before my stroke, Kitty climbed knocking it over and breaking the stand. This time she gently grazes against the lowest hanging ornaments and lays under the lit tree...napping. She has also enjoyed playing with DIY toys made from bells, ribbon, beads and even an odd pink ball left from past ornaments (mine are shatter proof). 
     
    NOTE: Stopped and started again. Just couldn't finish it.
     
    Today is the 12th...halfway to Christmas. I'm going to use this post to be real, talk with myself and hopefully have some clarity. For the pastn
     month depression has fallen over me. I just haven't felt well in many ways. Nothing has happened. There is no circumstance or catalyst save the time change which affects more than I ever realize each year. I ask myself "Why?". So I am going to explore that. 1...it's the holidays. 2...it's winter and time has changed. 3...my sleep is so unpredictable. 4...My meds have had some changes. 5...I'm tired physically and emotionally. 6...I feel lonely. 7...Motivation is very much lacking. 8...It's hard to know my focus right now. 9...Everything outside looks gray. 10...I'm socializing less (last month and since September I have been spending time with another stroke survivor {guy} I have pulled away and he is not asking me to dinner anymore. 11...Human contact is at a low. 12...This is the 1st Christmas without my dad and the 2nd without my brother. 13...I am really not improving on keeping my budget. 14...I just feel so unsure, about everything at the moment.
     
    OK I'm sure I didn't figure out every thing getting to me but it's a start. I don't feel any one thing any more than the other and I know it is chemical. I have no reason to feel "depressed" I just am. I've come to accept this understanding that this happens to me kinda like a roller coaster...up and down. (Not too up though...maybe I should say positive and negative). So let it run its course, do what I can to weather it the best way I can, keep my Psychiatrist informed, and not beat myself up. My therapist says "I think you need to give yourself a break. You don't have to analyze it.". In the mean time I am trying to keep myself busy and to find things that feel good around me. 
     
    This is the first year I have truly decorated for Christmas since my stroke. So, there is definitely that. The right direction. I have spent the last month crafting and doing DIY projects to make ornaments, decor and to do so without breaking the bank lol. I first decided my theme/inspiration...black and red buffalo check. So I did do some shopping but I have been careful to be conscious of how I spend. I did invest in a tree. I pulled all my old Christmas decor out and tried to fashion my crafts using these. So I bought 3 yards of 3 different material patterns: re/black buffalo check, white/blue with gold thin lines buffalo check and grey/white plaid. I cut each yard into even sqaures big enough to cover my former baubles. I think I had 12-14 of each design. I found old picture frames I had stored and made a plan to paint them and an idea to add decor/art. Picked out ribbon (red/black buffalo check) and a wider burlap ribbone. Bought some dollar store items: wood signs HoHoHo and Believe, some really pretty ornaments (about 10-14 of them)--metal stars, metal snowflakes, metal Christmas signs, clear ornaments with a sprig of evergreen and artificial snow (little balls) and a beautiful winter/Christmas scene made out of irridescent glitter around it, 3 fairy light strings, two types of burlap string black and natural, a few gift bags with nice Christmas designs I could cut out and use, a pack of Christmas wall stickers, a pack of red felt stockings and green trees, 2 red/black buffalo check scarfs, small clear plastic throw away containers with lids, 2 spools of 2 inch holiday ribbon that would coordinate, holiday floral picks, florist tape, florist wire, 2 mini Christmas trees, red and black paper poof banners, 2 calendars with neat farmhouse pics, magnetic tape, puffy sticky tape, a silicone scraper, fingertip covers (for hot glue use), tongue depressors and craft sticks, large yarn needles, pack of paint pouncers, 2 inch burlap ribbon, 4 sheets of black felt, a glittered Merry Christmas sign, green tree wire ties ( they look like Christmas tree limbs), 3 packs of  white dusters (like swiffer dusters that you slide on a handle) and i'm pretty sure a few more things. All of them were $1 each! At Hobby Lobby I got the large roll of wide buffalo check ribbon, silver ting ting stem pack, white shimmer/sparkly picks (like a boquet of flexible decorated sticks), a buffalo check table runner and 2 placemats, modge podge, acrylic craft paint, irridescent glitter, craft glue, several scrapbook paper sheets with coordinating designs, and a few more things. I also picked up a new glue gun (mine is no where to be found), glue sticks, craft paint brush set, a couple of stencils, a fluffy red blanket and perfect size black framed art pic from Goodwill. I got to work...cutting, glueing, painting, glittering, crafting and coming up with lots of ideas. I put some pictures in thr photo gallery. I am proud of myself and it'sbeginning to feel a lot like Christmas around here.
     
    My thoughts are scattered, confusing. It has affected my speech and thought process...more anomic aphasia and very choppy communication. Heck it's like i can't get a whole sentence out or stay on one subject or get my thoughts out completly. Frustrating. A few days of teary eye blues. Sensitive. A lot of sensory overstimulation. A very exxagerated startle reflex. Headache. Nausea and dizziness. Over sleeping and under sleeping. Stuttering. Increased anxiety and panic attacks. Getting behind sometimes on chores. More vision problems at night. I spend more and more time alone and speak a lot less. Avoiding people. What can I say i'm just in a funk. 
     
    At this point I dont even know what my desire is for this post lol. To me it is just scrambled. Regardless, I feel so lucky and grateful to be here. I am working on being in the now...mindfullness. I feel like I am getting better and better at this. At any one moment I have a flurry of feelings and I know they are there. Allowing each feeling to be and not avoid, try to change or justify them. Just let myself feel, recognize and accept. Some feel good, some feel bad but I try to let each experience be ok to feel. Quiet my mind...remove rumination...let it wash over me and then be open for the next wave good or bad. Haha I'm so philisophical sometimes.
     
    I want to wish all of you a very Merry Christmas and Happy Holiday. Thank you for letting me babble and be in the moment. Many hugs and much love!
     
    Tracy
     

  10. HostTracy
    Well I am finally in my new home...well new for me. Still getting settled. I've met a very kind and smart doggie he is a chiwuawua. He comes to visit me if i'm outside at night sometimes. All I have to say is "Go home." and off he goes. My neighbors on the other side of the duplex do not like me i dont think. I had some issues with the parking situation when i first came. It is just one lady that lives there she is mentally challenged and requires assistance 24/7 so there are always at least 3 extra cars around the area. They were parking in front of my house and in front of the mailboxes. I don't do well on uneven surfaces so going to the mailbox was scary (on a hill). Anyway, I talked with my managing company and they told me everything was against the "rules" that we both signed in our leases and they would take care of it. They contacted the ladies' employer and when that didn't work they contacted their boss and then their bosses boss. The cars are no longer parking in front at all. I live at the end of a dead end street and have a full side (paved) for plenty of parking. Anyway, I don't think I am considered a great neighbor. oh well. I'm really very nice.  For the first week my daughter stayed here with me as she waited to move into my room at dad's until i had the carpet cleaned. She said it was to help me unpack. I absolutely love my daughter but we press each other's buttons and are each other's triggers. We can make each other have a panic attack. I have slept here by myself for the past 3 nights and I have needed the rest mentally and physically.
     
    Kitty loves it here I think. She is playing with her squeaky mouse a lot and has 2 places to sit and sun and look out either the front or back window. I'm planning on getting her interactive puzzle things that she can play with and get a treat. She has become less active and her vet said she was a senior kitty. She is approximately 10 years old. She is my baby. I'm so glad we are here together.
     
    I went to see my Psychiatrist this week on Monday. I really needed to see him...everything cognitive has gotten worse and I have been having panic attacks often. I told him I feel it is all the stress of the last two months and the stress of the move or at least I hope. He talked to me for some time about the kind of stroke I had and everything I have noticed. He brought up a word for the very 1st time...and it is a word i am terrified of...Dementia. In 6 weeks when I go back and things have settled a bit he wants to do testing for cognitive and memory things. He wants to get a baseline. His concern is not that I can be diagnosed with that now but it is possible in the future. It's different from Lewy body dementia...alzheimers. It happens over a very long time...the changes...and usually not complete. He told me he has been to seminar recently on the very subject and what science says is that there has been a problem in the past with diagnosing this. Many have never been diagnosed until it was too late and an autopsy was being performed and they found the brain changes. The best thing to do is keep a watch...get a baseline and hopefully will never need to use it. He also said eat whole foods as much as possible, no boxed or manufactured stuff. Eat organic when you can. Reduce sugar intake...especially refined anything. The number one important and most helpful factor is some form of excercise about 30 minutes per day. No need to kill yourself but don't doddle either. Science says that is the #1 way to reduce your chances for cognitive decline. I already have cognitive decline so it is especially important for me. My stroke continues to leave me with a lot of cognitive deficits. It's a lot to think about.
     
    I'm trying to keep my mind busy and my body. I've been so tired. I'm trying to keep myself in check and get out of the house even for a little while. Reduce the urge to be alone. Believe it or not it is an urge. Life is exhausting to me. People are exhausting to me. Places are exhausting to me. Sounds are exhausting to me. Smells, sights, thoughts...everything sensory is exhausting to me. My urge is to avoid, but it is not what I should do. This is so frustrating.
     
    My house is perfect, however. Two bedrooms, a great kitchen, a patio out back, a porch, really cool shelves with doors located between the wall joists, a storage room you get to from the back outside, my washer and dryer fit but I do have to leave the folding doors off that normally closes the area. I'm glad mine are actually nice looking and compliment the decor.
     
    I'm going ahead and posting this unfinished blog. A lot has happened and I haven't been able to finish it. 
  11. HostTracy
    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. 🙏
  12. HostTracy
    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... 
  13. HostTracy
    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. 🙏
  14. HostTracy
    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. 
  15. HostTracy
    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!!! 
  16. HostTracy
    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. 🤗🙏🤩🙋‍♀️👂🤞🏡🌷🏵️🌸🌻🌺
  17. HostTracy

    February 2019

    By HostTracy,

    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.
  18. HostTracy
    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.
  19. HostTracy
    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)))
  20. HostTracy

    Thinking Out Loud

    By HostTracy,

    *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.
  21. HostTracy
    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! 🤗
  22. HostTracy
    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.
  23. HostTracy
    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.
  24. HostTracy
    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.
  25. HostTracy

    I Think I Won!!!

    By HostTracy,

    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.