Jump to content


Stroke Survivor - female
  • Content count

  • Donations

  • Joined

  • Last visited

  • Country

    United States

Everything posted by tmciriani

  1. 😲 So today I was helping my sister while she is moving into her new house. I took all her closet clothes from the old house to the new and helped take them inside. I dusted as furniture came in. I took a break and my sister had to go back to the old house. I stayed here to take a break and wait on the security guy to come. He came at 2:45pm and I let him in and then 😑 nothing until 8pm. Slept like a literal rock. Through a second round of movers bringing in furniture and other stuff. Two kids. Four adults. Marilyn (my sister's very loving boxer) giving me lots of kisses. My mom bringing pizza and she also brought Marilyn home. I thought I had dreamed mom's voice and Marilyn's kisses. 😳 Nope, real. 5 hours. On the couch. 😶 Wow.
  2. tmciriani

    This is definitely a new experience. Good news: I am waking up and not fighting my body to wake up. I was worried this was going to get worse. What happens when I can no longer force myself to get up. 😵 Bad news: Ok so my sleep cycle is still out of whack. Maybe like 3-11 or 3-12. This is pretty normal for me. It's that whole business of having a healthy sleep cycle that screws up until it comes back again to healthy (in my eyes...or like I want it). 👍 I can handle this! Frustrating for me at times...more so for others (I don't care!!). So all in all positive. 🙂 I am having less and less emotional flooding. 🙆
  3. tmciriani

    Making Plans Can Be Intimidating

    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.
  4. tmciriani

    Thank you guys. I feel the same way as you. I feel better already making the decision to go on a journey with no pressure. Just for me. 🙂 When I get going I'll be sure to share with everyone here. I'm not going anywhere. Hugs!
  5. tmciriani

    LOL Janelle I have no idea but that is an excellent suggestion. I think I am going to begin this new journey as a journey and not an income source. I already feel the pressure and I haven't even started. If it becomes more then great! I am going to look into the Dummy book! Thank you!
  6. tmciriani

    Hi Steve, my apologies, I must have missed your posts. I'm glad I saw this one and wish to welcome you. This support site has been a really great place for me. Validation, friendship, health information, support, a blog you can start, chat (scheduled), a picture gallery, and definitely a place to share, vent, and give support as well as get support. My name is Tracy. I had a bilateral cerebellar stroke in the PICA region July 5, 2015. I'm so glad to hear you have had a really positive recovery and transition back to working and getting back to life. It's an inspiration. 🙂
  7. tmciriani

    Pretty picture. 🙂
  8. tmciriani

    Janelle I am on week three of Nuedexta. I'm not sure what is the issue. I know some days I need extra sleep but I don't know...confused. 😞 I'll keep sending updates...falling asleep as I write lol. This is good (3:17am!). Ok night all.
  9. tmciriani

    Steve I am on my new medication Nuedexta. I have chronic debilitating PBA. It's week three and it takes 90 days to reach optimal blood serum level. I'm actually worried that by then I will be unable to wake up. 😕 I'm actually having a difficult time going to sleep tonight but if tomorrow morning is anything like this morning...I'll have an hour of trying to open my eyes. I sorta wake up and then before I know it I am back to sleep then a few minutes later trying my best to open my lead eyes and poof back to sleep. 😵 I finally got enough strength to push my body upright. It took an hour after that to fully wake up and function and my body hurt all over. Weird issues. I'll keep you guys informed about changes. I know this medicine has to be helpful to other stroke survivors with PBA. I may not be one of them. I'm calling my Psychiatrist on Monday with an update.
  10. I am proud to say I have influenced a change at least for my local area's hospital stroke care and protocol. So 3 months ago my stroke support group hosted a local Neurosurgeon to speak about stroke to us as well as many of the hospital staff and other stroke survivors and caretakers not in our group. It was a really awesome seminar and we covered many big topics about stroke, including F.A.S.T. This is where I began asking questions because I had a cerebellar stroke. It does not usually fall under F.A.S.T., it's only less than 2% of all strokes combined, it is the least researched stroke, and the stroke most often misdiagnosed. F.A.S.T. is what the American Stroke Association pushes to recognize when someone is having a stroke. 1st F.A.S.T. has a general meaning...know these symptoms of a stroke and get help fast...a person's life depends on it. F=face (drooping, uneven smile, usually on one side) A=arms (can a person hold their arms straight out in front of them or does one of them slowly fall or can't be lifted) S=speech (ask the person to repeat a sentence or answer a question. Is their speech slurred, not able to be understood, or is the person having trouble just speaking.) T=time (If you said yes to any of the above then it's TIME to call 911.) Time can save lives. My stroke, however, was different. I had no one sided weakness issues in my face or arms, I did have trouble speaking but the biggest issues apparent were severe pain behind the eyes, issues seeing with the eyes, extreme central vertigo or balance issues, uncontrollable extreme nausea and vomiting, walking/ coordination issues, and double vision. My stroke was massive, bilateral and still misdiagnosed until almost 2 months after. I was extremely lucky to live. I asked him many questions probably more than anyone. He acknowledged the extreme differences and that F.A.S.T. didn't include cerebellar stroke symptoms. I asked him if the ASA had any plans to change the acronym for one that includes these symptoms as well. His answer was no. The acronym is used to help others recognize the warning signs of most strokes. 98% of all strokes fall within F.A.S.T. Obviously being the only person at the seminar who had had a cerebellar stroke, I was a bit upset. "What about people like me" I said. I could tell I had put this Dr. in a precarious position. He didn't know how to answer. I kept asking many questions and after the seminar he came and talked to me. He shared with me some Dr.'s in the local area that were familiar with my stroke and the syndrome it can sometimes cause: Cerebellar Cognitive Affective Syndrome. Last meeting the coordinator came and spoke with me. She said that her and the other two coordinators were concerned that the hospital could do better and be educated about all strokes and their symptoms. The other 2 coordinators are nurses for the stroke. She told me that because I spoke out for myself and all other cerebellar stroke survivors that the hospital decided to change how they train their staff. These 2 nurses went to the stroke dept. and told them my story. They listened, rewrote the training literature and it was being distributed to all hospital staff the next day. OMG I made a difference. A whole hospital changed their protocol because of me! 🙂 My plan is to help expand this change to more and more hospitals. I feel like I have done something. Really done something! Thanks for listening! Love you guys!!
  11. Thanks John I hope so too. 🙂
  12. Why am I awake?! 😲 It's 4:45am. I don't even know if I am sleepy. I think I should know so I assume probably not. Why?! I feel like a comet that goes around and only gets it right (we can see it) every so many rotations. Sleep/awake cycle completely opposite>sleep more during day>napping at later times>going to sleep at midnight waking up late>going to sleep at a normal hour and waking at a normal hour>more daytime napping>getting to sleep later and later and sleeping later and later>total backwards sleep cycle...and it never ends. 😕 Anyone else experience this irritating phenomenon?
  13. tmciriani

    Well said...congratulations on your 5th stroke anniversary!
  14. tmciriani

    I guess I have been afraid to ask my doctor. I take a lot of medicine am and pm. Unfortunately some of my medicine I take am and pm and they cause drowsiness but I have to separate them. I go to my Psychiatrist tomorrow...I will talk to him. Thank you Becky.
  15. tmciriani

    I feel like I am always having too little sleep or too much. At times I sleep 10 hours straight. Naps are common every day. I have a lot of neuro fatigue. Other days or nights rather I toss and turn and go between bouts of sleep and wake. I may take a nap the next day but usually do and then sometimes I can't even though I desperately need to. I go days at a time where sleep only happens in short spurts. It isn't because I am not tired. I feel exhausted all the time. Then I might have a few days where I am sleeping a lot through the night and day. There is no definitive pattern.
  16. tmciriani

    Plus I'm hungry at now 4:57am.
  17. tmciriani

    You're much braver than I feel I would be. I've said it before...you are an inspiration!
  18. I'm sending prayers as well. I know how scary and foreign this must feel. Try to be as patient as you can. There is usually much improvement in the first 6-12 months. Every stroke is different and every survivor recovers differently to some extent. Talk with your husband's Neurologist so you can be more informed of what his particular stroke may affect, make very certain that he is given as much therapy as possible as early as possible. The brain is fascinating that it can rewire itself around damage. It is not perfect but with plenty of repetition those connections start to form. Many survivors who lose speech or lack empathy afterwards are still able to understand those around them. Being supportive and encouraging, though difficult and scary, can mean the world to your husband. There will be changes, improvement, and challenges. Never feel like something has no chance of improvement. Embrace the positive. Be involved...the therapists can help you and your husband with communication. Know that we are here. Please keep us informed. Sending many blessings.
  19. tmciriani

    I am a regular every other month at my shrink's office. I suppose that word is very unprofessional but he has been and still is a miracle in my world. He is my Psychiatrist but knows I can't get therapy until I have insurance so he blocks out a whole hour for me and we talk. So not only does he treat me and is not afraid to, he has promised to do everything he can to help me...I'm an unusual case. He is so hard to see for the first time...it takes many months and he sees you once...diagnosis and medicine trial and you do not see him again you only see his colleagues. However, since I'm a weird case that sorta intrigues him he made it clear the first appointment that I would only see him. He has worked with me and helped me through trial and error to come up with so far the best treatment for my syndrome from the stroke. He researches and has made in my opinion a concrete effort to understand and treat me. He has been a huge part of my overall treatment. My Neurologist said he is the best Psychiatrist that she knows and to not stop seeing him. I feel so blessed.
  20. tmciriani

    😁 I'm sure I did too Janelle. I don't remember exactly but I think I had a hard time looking at him when he looked at me. Don't get me wrong...oh I looked! 😍
  21. tmciriani

    Wow Pam that was excruciating to read. Put through the ringer not once but 3 times? Sending you hugs...you are brave my friend. After all of this I still am so excited for you. I pray that this zapper does better than even studies expect. For you! 🙂 Keep us informed! 💕
  22. 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.
  23. tmciriani

    Hi Lisa and Welcome. I encourage you and Pete as well to read lots of threads and ask as many questions as you want, feel free to vent (we all know I do lol but lots of us do and this is a great place to let it out), start a blog, join a chat, and check out all of the articles and information about strokes. I'm a lot like Kelli, social butterfly turned to the epitome of anti-social. It's not because I don't like people I just can't handle the overstimulation or agitation I feel around certain things i.e. crowds, noise, dark, too much light, just simply being put on the spot. I also have felt very isolated...out of necessity. Joining this online stroke group really helped and joining my local stroke support group has been a real game changer. Imagine being in a room and the whole audience (about 20-30 in mine...we keep growing) all listen and validate you and truly understand. POW!!! Mind blowing! This is how I am coming back from isolation. It's me socializing again. These guys and my local stroke group are like part of my family. It's been a blessing for me and I hope you can feel that too you guys. 🙂
  24. tmciriani

    Thank you so much Kelli! I feel like I can express myself so much better writing rather than talking. 🤓 I spoke with another very nice lady who reads and watches a blog and vlog that I also read and watch. It is about planning, being productive, and how to use a planner to help you. She has ADD. I thought about you and I. We both had ADD before stroke...having ADD after stroke well I've said it before...ADD on steroids. I talked to her about how my 2 speech therapists worked with me to utilize a paper planner and that planning month to month was not going to help. It needs to be a daily planner. In my case, hourly. We very much related to one another. ADD and ADD/stroke that caused loss of executive function. 😵 At this point I have no idea why this thread made me think of this lol. I'm not sure what my point was. So instead just thank you!😁
  25. tmciriani

    I agree with Heather and Kelli too Mark. For me, I had severe anxiety right from the start...still do but I also had a weird stroke. I have heard lots of other survivors and read lots of medical literature that all say it is a pretty common response after having a stroke. Also that many improve a lot over time. Some with a doctor's help and some on their own. I'm sorta a weird exception. The first thing I would recommend is communicate this with your Physician for sure. You don't have to suffer or have anxiety get in the way of recovery that's the great news. I also say 1st communicate with your Physician because stress can be a big factor in medical history before or after stroke. Either way it can be harmful. It increases your blood pressure and your body produces certain chemicals that can further a inflammatory response. Both can increase your stroke risk. I have heard so many other survivors say that anxiety that they had after stroke got tremendously better or went away all together. 🤗 We are glad you are here!