HostTracy

Stay safe you guys! ❤️

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/ See you soon!

Congratulations!!! Happy 20th anniversary. Two weeks ago I splurged in a really naughty way. I bought a whole fudge cake AND ice cream. 😳😬 I decided to only eat the top layer over a few days with the icing on it {ALL THE ICING... MMMMM} and I tore the ice cream up. 🤦‍♀️So, I am really making myself behave since. It was a guilty pleasure. I had lots of pleasure eating the guilt. 😂 I'll have to be good for a while.

Kevin I love your direction of thinking. LOL I have definitely been in that position of 2nd guessing something once I start. Occasionally, I throw my hands in the air 🤷‍♀️. But I am pretty darn stubborn... My daddy always fussed at me because I was stubborn. So on other occasions I conquer the moment and have the YES!!! moment... and other times stubborn gets the best of me and I pay the price for a few days. I'm pretty glad I'm stubborn though. I think I have gotten further doing so. Keep up the good work! 😃

Haha Heather...good catch! 🤪 Janelle... I just 💚 you! 😊

That is such great news Sue! These triumphs mean a lot I'm sure! I know they would to me. I'm so glad you have Shirley for support and to spend some needed "take care of me time" with someone you enjoy spending it with! Thank you for the update and sending prayers and all happy thoughts for the scan in August. (((HUGS)))

Heather it doesn't hit any sore spots at all. I'll have to look into insulin... I've never heard of it. Could be a good thing. I sure hope your sleep settles down soon! I am so lucky that writing down my thoughts is usually just what I needed.

I have been following the dreadful news of the terrible flooding there. I am so thankful you are perched on higher ground and pray that all continues safely. Many prayers for everyone displaced by the ravages around them now. I know you are helping many cute furry kittens. Wow, they are so lucky to have generous hands working hard to cuddle them. I am delighted at the thought of it and the picture shows how warm and cuddly the mats are (well I think I saw a Pic yesterday 😊). Good to hear you will have visitors soon. During this time of covid, family, friends and visitors are so essential and such a blessing. Sounds like you are enjoying the beautiful sights and sounds around you. That normality you speak of is music to my ears and I hope you are blessed with as much of it as possible. I truly enjoy reading your updates and may you have many happy updates to share in the future. Thank you Sue. 😊

LG I spent a good while last night reading all of the posts since your first. Seems I have been absent for a long time and my heart goes out to you. I wish I could just morph right through my app and just be there for you. Grief can be such a personal thing (everyone goes through this differently). You seem to be grieving in multiple aspects and all I can say is time and pray for you on your journey and hugs from afar. I think you are right... Everything I just read in your last post screams grief and very raw grief. My heart just hurts for you. I know I'm not right there and I can't pick up all the pieces as well as you but know I am here with you in my thoughts, prayers, and heart. Do you have a therapist you can speak to? It may be a blessing to reach out for such support. My message is to give your grief grace, be good to yourself as much as you can. Surround yourself with as much warmth and softness as you can. Just imagine a warm soft hand picking you up and holding you (we all need to be carried sometimes to rest our weary body and mind). Know that I am and it seems many are thinking of you and I hope that this comforts you in even the smallest way. ❤️

Sue, this is why I love it here. Your message is perfect and means a lot to me. Hugs right back to you my friend.

Asha you are a gem and a wonderful positive support. You and I have talked about this very same thing, but I hope you don't feel any part of my blog is directed to you or anyone in particular for that matter. I really just needed to get some weight off of my mind and it did the trick. 🙂 Writing my emotions has been a positive way for me to process them and feel better inside and I am thankful for being able to write here. I feel less alone and right at home here. Thank you for reading and thank you for positive thoughts. I really do appreciate you. ❤️

Chiming in late here but this is a topic I very much relate to. My stroke was in the cerebellum (bilateral) and I have balance issues, disequilibrium and central vertigo (not proximinal?... central is caused by brain damage). With that said, I still experience these things often. I definately do not fall as much (I am laughing thinking back to some of my falls and thank goodness none have caused serious damage). I have learned many coping techniques. 1. Stare at a stationary object in the distance when trying to balnace in place. 2. For me I have to use my eyes to balance more now because my vestibular system is basically shot (vestibular therapy was not helpful to me but for many it is). 3. Fatigue can really increase my vertigo and balance issues. I try to pay attention to my activity so as not to over do things. On days where I am more dizzy than others I take it easy, get up and get down slowly, hold on (I have my cane close by even though I rarely have to grab for it). 4. I am extra careful at night (my sight is the pits at night and therefore my balance helper doesn't help as much). 5. Have the Drs said anything about it being proximinal vertigo? My mom has this and there are some maneuvers a physician can do to help correct something in your ears (sorry... mine doesn't have anything to do with my ears so I'm not sure what it is). You did say you were going to PT right? This definately is something I would recommend...especially after 10 years post. I think our brains and bodies get lax at mechanics some times so revisiting some therapies is a great way to refresh yourself. I definately have declined in physical weakness over time and ROM which means Tracy gets clumsier. I have been going to PT for neck and shoulder pain but we are also doing some things that can help to improve my coping skills (my vertigo doesn't have a cure but it can improve by learning how to cope better). I wish you all the best and I wish I could give you some ideas of good places in Flint but I'm in Tennessee. Oh, when I was in PT after my stroke we practiced body mechanics when I feel like I might fall or if I start falling. It has helped but not 100%... as Kelli stated earlier sometimes just a pebble can trip me and sometimes I fall (splat) so fast I dont have a chance to use these. During these moments going with the flow is sometimes better than reaching out to catch yourself (usually less painful and heck all I need is a broken arm or wrist lol). Again, I sure hope you find some helpful answers.

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!

Paul (((hugs))) first. My heart goes out to you and it's no wonder you've been feeling so yuck. The stresses around us and especially when the complexities of stroke defecits pepper our world... It can feel chaotic, unrelenting, hopeless, confusing and a plethora of other feelings. I have been in a similar state the year and a half after my stroke. Different circumstances but I am sure some of the same or similar feelings and uncertainty. My brain just couldn't process my circumstances. I am now on my own by choice but we were not married. I'm almost to my 6 year post stroke and I am aware of my issues... Many are Cognitive and Psychological. I want to tell you that your perseverance tells me a lot about you and your heart. I can only imagine how 6 years of both of you suffering in one way or another has tinted the dynamics for you both. I understand not understanding if that makes sense. I relate to many of the things you have talked about for yourself personally. Covid has been a true thorn for so many. I know when I am full of stress in any way that my Cognitive and psychological issues really suffer. I read one person talking about Telehealth Dr visits (video/audio) and I do this with my Psychiatrist every other month and my therapist every week. Maybe it something you both can do together (couples therapy) via video conference. I can hear the love for your wife and family clearly in your post. Therapy for me is a must and I look forward to it. It has helped me with my own issues and with my relationships with my family and friends. It's not easy to say "I need help" but it could be very beneficial for you both. I also have a lot of memory problems and I have had to learn ways to help myself... Just remembering to do those things as well as utilizing very visual aids. For me it is my planner and dry erase board, my phone for alarms (for everything) and a lot of practice (I plan practice too). I know for myself I can forget mid sentence my point. I too remember a lot of random stuff and maybe not even understand why it is a memory or if it is a memory. Something that has helped me in ways I'm not even sure how (helps with depression and negative thoughts) is keeping a gratitude journal (I use the GLAD method). It doesn't help with a specific hurdle but helps to improve my mood, thoughts, self esteem/worth and because of that helps me deal with my hurdles. Also, getting some help for you and your wife together can help with communication and processing information. I don't dare think that I have all the answers I just know you, your wife, your marriage, your health, your spirit... Are all worth it. I am praying for clarity calming answers for you both and spiritual healing. Hugs again... You can find your way back to the calm path it may be a bumpy ride but I hope/pray for clarity. ❤️ Thinking of you guys!

Oh Janelle I am so sorry for your loss! RIP Lucy. I hope the other fur babies in your family can offer all of you some inner peace. 🙏🏼❤️