HostTracy

Deigh I totally understand that! I'm glad you are getting through to Asha's chat!

Chat starts in 15 minutes! See you there! 😀

Thank you Asha. The nurse came later this morning and when I left 30 minutes ago he was in good spirits. I really appreciate your words.

Yesterday my dad had his 2nd round of chemo (4 different kinds of chemo drugs). He was shaky and weak when he got home yesterday. At 5 this morning my stepmom wakes me up in a frenzy. Daddy had fallen in the restroom and she couldn't get him up and he didn't have the strength to help. Plus he went to the restroom without his oxygen so he was running out of air. It took us both 15 more minutes before we got him up on the shower stool my stepmom had grabbed out of the tub. He seemed OK, no broken bones, but a pretty nasty gash on his arm. We cleaned and bandaged him. I went and pulled out the walker he has yet to use but he did this time. He was in the bathroom so he basically fell and then peed all at the same time. Everything was wet, his clothes, the floor, the top of the potty and anything else nearby. My dad just there breathing in oxygen heavily (I brought him his Mobil oxygen machine)... All he kept saying was "I'm sorry". Which we quickly told him there was nothing at all to be sorry about. This is a harsh mix of poisons they are giving him every 3 weeks. It's hard to see my dad be affected so much. Please keep him in your prayers. He needs every prayer we can get. 🙏

I have worked so hard, waited so long, dreamed so much, needed so much and I feel the page turning. I have such an overwhelming feeling that the page is turning, the Chapter is ending and a new one is beginning. I am full of anticipation, gratitude, excitement and fear. For the first time really... This chapter is about me. I can't explain my feelings... I am closing my eyes and letting each one wash over me. I feel it coming. It's overwhelming. For some reason even though I have fear I am not afraid. I know this sounds a little out there...but I feel it. Thank you Lord. I can't express this enough. 🙏

I had a massive bilateral cerebellar infarct in the PICA region. Since July 5, 2015 a whirlwind of things happened and eventually after a very long evaluation from a Neuropsychogist... I was diagnosed with CCAS or Cerebellar Cognitive Affectice Syndrome. I still have deficits that are not considered as part of CCAS symptoms but this diagnosis (which may I add is extremely accurate according to what happens to me daily) has been quite the controversy. Something a stroke survivor never wants. My experience has led me to my wonderful Psychiatrist (I credit him for believing in me and researching on my behalf which over 2 and a half years has led to the best help I have had thus far). He is absolutely there for me and continues to work to find a better treatment. I thank him everytime I see him which is a lot (every other month). I also have Cognitive Behavior Therapy each week. I want to point anyone who is interested to the growing information about CCAS to the many articles which are growing quickly in number. Science and the Medical world have in the past thought the cerebellum was only responsible for a very specific job. One that did not include emotion at all. Newer research has proven that is not the case. The cerebellum contains more than 50% of all the neurons in the whole human brain. The "Little Brain" is doing a lot more than we realize. Thanks to research lead by Dr. JD Schmahmann and his colleagues there is new medical science being discovered about the human brain. All in all it is fascinating and for me it is miraculous. Here are the words I searched on Google: Cerebellar Cognitive Affectice Syndrome bi-polar, schizophrenia, ADD, mental illness If you are fascinated by the human brain, curious of medical discoveries, or like me and are all of those things plus (I had a cerebellar stroke) and I hold a passion for learning about others strokes as well... Heck the brain in general!!!... Then this will interest you. 🙂 OK I also want to share why I am cooky lol.

I'm a little giddy thinking about it Heather! ☺️

He is gorgeous! and a fighter! I'm am so thrilled you are getting down there to see him. I know you are over the moon! Look at that little man... You be sure to get some pics of him while mimi is holding him!!!

Sue thank you so much for everything! It is nice to know someone is finding good in my journey good or bad. I feel so much the same and truly enjoy reading your blog. I feel I know you so much more after reading even across the world! Thank you for letting me be a part of your life... It's a treasure! Good news BTW... My panic attacks have settled down, no more sounds or seeing things. My Psychiatrist said he is not very concerned because he has been keeping up with my moments (that's what I call them). He said it has always happened when something very stressing has happened and that it has subsided fairly quickly each time and he sees that I am aware and forthcoming about it to him. These are all positive things in spite of what's happening. He knew from the beginning that I would have break through moments...but he says I handling them like a champ! I just smiled and said thank you. I don't feel like a champ during lol but after things calm I feel OK which is good. 🙂

Heather 😳 I hadn't even thought of that lol. Man I hope not either. I did see my Psychiatrist Wednesday and he all in all was pleased even though I've been going through a lot. He said he feels that I am handling this pretty good... That it was a pretty big blip and I am already feeling better. No med changes yay! Also, one thing comes to mind because I have Cerebellar Cognitive Affectice Syndrome and it is really rare and a lot of people have never heard of it much less know what it does. From what I understand it can rear its head by displaying symptoms of many psychiatric issues. I read it can have similarities at different times to ADHD, Bi-polar, Schizophrenia, Anxiety Disorders, Depressive disorders, and more. So it kinda makes sense in that way. I will be keeping notes though...and share with my Dr. and Therapist. I am superdeduper excited about my own place! I can't wait to share the good news!

http://www.strokechat.net/ Hey guys chat is open, come on in.

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!!!

Smiles... Deigh I noticed you chatted with at least Mark! I was thrilled to see you had gotten through! One day Deigh... One day we are gonna bump into each other! 😉

Haha that's OK I hope you stayed warm abd cozy!

Hello everyone I just wanted to invite everyone to come and join in at Room #2 Stroke Survivior Chat. I will be hosting Mondays and Wednesdays from 3-4 EST! 🙂 http://www.strokechat.net/ Chat is starting right now in the the #2 Stroke Survivor Chat Room! Come join us!

Janelle lol I get emotional everytime I really think about any of it. This stroke has humbled me so much. I know what it is to truly be thankful. I don't know that I ever understood that as well as I do now. Oh shoot...here come the feels 🧥<------- I can't delete the coat 😐. 😭. I love everybody!

Yes yes yes!!! I'm so very excited. I have felt a little self conscious of seeing my friend after so long. I was size 4 and hot lol, I didn't of course have my current issues... I don't want to break out stuttering in front of him. I sorta had a crush on him in elementary school. 🤭 My sister is a real estate agent too so I asked her to call and talk to Jim about the duplex. I didn't know but she told him my worries. Jimmy said "I can't believe she thinks that for a moment. I would never ever think less of her for anything.". I got all emotional once again lol. How can I ever thank him. His help means SO MUCH to me. Without him reaching out to me, I probably still would not have found anything yet. God has heard all the prayers!!!

UPDATE: My friend Jimmy says the duplex is finished but he had to inspect it himself to see if all would pass THDA inspection for section 8 housing. He said 2 more things have to be worked on (he is very aware of what their inspection needs are) and to give him about a week and then i can come lokk at it and we can fill out the paperwork. The THDA paperwork can take up to 2 weeks to complete the process which includes their inspection. So 3-4 weeks!!!!!!!!! This news made me ugly cry lol. Feeling very blessed, excited, so thankful, emotional, happy, a bit impatient but i can wait 😀, a little scared but i am ready to face it!!!! Oh my goodness I am full of the feels!!!!

Thank you 😊! It still amazes me! 🙃

Janelle I hear you loud and clear! You know sometimes I get too big for my britches and life has a way of bursting my seams. Always a price to pay. I'm getting better at being a penny pincher. I have my ideas in a book... I go back to my days of speech therapy (for me it was a lot of cognitive work). Start.... Finish. Choose another idea. Start... Finish. Choose another idea. 😊 It works... I don't always have my therapist's voice in my head but I work 100% better when I do.

Sue it it a happy message to hear about how much you enjoyed your company. Thanks for letting us know. Also sounds like Chris has wonderful plans and aspirations for his future. I know you are so proud. 🙂 Keep us up to date about your coming surgeries and I send my blessings. BTW 😁 you will eternally be "HotSue" to me for it has just made home in my memory. Many (((hugs))).

Deigh I will be sure to try my best at sending out an invite a few minutes before chat. I usually do but I have forgotten before. Are you interested in the afternoon chat or evening chat. I know that's not an easy answer but I believe it is about 16 hours ahead of EST right now. I think I read right. 🤔 Maybe that will help 🙂.

So true Heather. I forget sometimes...i am one of the lucky ones or just in the right place at the right time. Deigh I feel your irritation.