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Stroke Survivor - female
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Everything posted by tmciriani

  1. I just got to thinking since I came back from my bit of a break from Strokenet that I haven't heard a word from Linnie. I hope she is ok has anyone heard from her?
  2. I'm Just Going to Think Positive

    I also wanted to share with you all that my dad is going through some health issues right now. Some scary ones. He has already been diagnosed with COPD 2-3 years ago and a recent chest scan showed 2 suspicious spots on his lungs....one new and one that they had noted before but it has grown. Last week my Dad had a biopsy on the new one. He had to be put to sleep and it was done through endoscopy within his bronchial tubes. He is so blessed to have a negative biopsy and no cancer found in the first spot. This past Monday he had a second biopsy where they went straight through his chest into the lung (he had to be awake because he had to control his breathing for the test). His physician just called this morning and told my dad he would make an appointment for him and my step mom both (she is out of state due to a family wedding) to come in for results consultation. I didn't say a word but I felt inside that it doesn't sound good. I really don't know though. The Dr. told my dad and sister last week that he is 97-98% positive that it is cancer but he has to find out what kind...that will determine treatment. I am just trying to be positive and present with my father while my step mom is not here so it won't trigger his anxiety. Please keep my dad and my family in your prayers and thank you so much if you do. Hugs.
  3. Thank you Asha. Yes I hope to know more tonight. They told my stepmom what kind of cancer but she can't remember so my sister is going with them today and take notes. Course of treatment will be dependent on the kind of cancer and staging. I have my hopes up that it was caught early. I'll write updates. Thanks.
  4. Oh I really hate that, and yes Asha I miss her. Steve thank you for updating me. Asha if you do speak with her let her know I was asking about her and I miss her. Thanks.
  5. Kelli I have to say I'm in awe of your bravery. You took a chance and it was positive. Way to go!!!!! I know your parents were thrilled to take you to get a taste of their musical past. I would have loved to have been there!!!
  6. Thanks Heather...the best thing I can do is try to be positive. Otherwise I don't know how I feel. Being positive is the only thing that can be good for right now.
  7. I have to agree with everyone's comments. For me making a list is really important. Prioritizing is hard for me but if I know it is something very important I will usually give it its own list and focus on that first. It works best for me when I do it everyday and I don't beat myself up if things don't get done I just write it on the next day's list. If I get lax or fall out of habit with this then I revert back to what my speech therapist taught me about planning and accomplishing. I set up my day by the hour...using each hour for a task. I also keep a very important list on the same sheet, I focus more on these. Some days I just can't seem to get the energy to accomplish my list and I know it. On those days I place all my focus on the really important things like disability paperwork or financial assistance applications...these usually have a time limit. Then I reuse those missed tasks on the next days list. As far as getting the gumption to start and finish something I sometimes set a timer, sometimes just do something right then as I think about it or am reminded of it because I went into that room. Sometimes I make myself follow that list and some days I just don't get it done...the key here is to not scold yourself for it. Like you and I have talked about Kelli sometimes I have to rest up to build my energy for something I know is needed to be done but that I know will deplete my reserves and therefore pay some price. Preparing helps to lesson the price. Remove distractions...that will get me every time.
  8. Pure Excitement and Moving Forward

    I just want to share with all of you that I received wonderful news in the mail yesterday. My disability hearing was scheduled!!!!!! The day is October the 25th!!!! Months before I expected. I spoke with my lawyer today and he had really good things to say. He said he was just thrilled at the judge I got. He is really fair, really has concern for others (empathy), is not swayed by age of the person trying for disability (my lawyer says that there are a lot of judges that really look over some because they are younger...under 50), and he is very caring about mental health issues. He said I really have a good chance just because of that. Everything he said was positive. He told me he will be in touch with me at the end of July and we will work on making sure they have all the health records or anything new and that my file is complete. I am really emotional but in a happy way...it is just overwhelming that I feel some positive and I couldn't wait to share my good news with all of you. I pray and dream about the ability to have my own home and to be on my own. I sometimes try to look at home stuff I like and plan and imagine just being on my own and can make my own decisions. Just crying lol. Any positive thoughts and prayers would be so wonderful.
  9. Tonight my stepmom came home and I overheard my dad and her talking about the phone call on Friday about his lung biopsy. Seems the Dr. Had called them both and had given them both the same information that he is positive for lung cancer. So my dad told me a story...He told me he just didn't want to talk about it and that he still knows very little until they go to the Oncologist tomorrow and he didn't want to upset me. They also kept the news from each other...Dad didn't want to ruin her trip to a family members marriage and she didn't want to tell daddy while she was goner so he wouldn't be upset and alone. No matter...my dad has lung cancer. We will find out more information tomorrow.
  10. Nancy it definitely sounds like yours and your husband's worlds are feeling much smoother. That must feel so nice for you both. It's nice to hear you two are finding new and nice ways to cope with whatever life is bringing. I think it is so great that you encourage your husband to want and need to feel useful...that means a great deal to a survivor...and to find things that help with your own responsibilities at work. He is lucky to have you and salute you for going above and beyond. I know it must be so tiring and can be stressful even though. I think it's great that your sister is giving you so much needed help to have time to recharge. Great update.
  11. Just makes me smile! Fur therapy is so under acknowledged...I know from experience that my kitty has been a huge part of my recovery. We all need that unconditional love and a way to smile and laugh and lighten the heart. Congratulations on Leila...I know how much love and affection will grow.
  12. That happy feeling of accomplishment is such a huge motivator for the next time! Congratulations!!! You deserve congratulations for so much paperwork Asha and doing it with gusto!
  13. Always an inspiration. I really understand those mid winter blues. They come around each year like the holidays. The good news that I continually tell myself is it will fade with the winter chill. Asha has a great point...going with the flow instead of being mad at it. Some things are always easier said than done but you always seem to defy that. We stroke survivors are lucky you still hang out with us Sue.
  14. Thank you Heather . We will be welcoming baby Harper.
  15. I've been visiting my sister since July 4 and I've really enjoyed it. Today is Saturday and I will be going home at some point today...it's about an hour away. My brother-in-law has 4 children and they are here every other week...this week. I really enjoy being around them but they all can be disrespectful and mouthy to their dad and my sister so I know at times things get a little rowdy. Today is a day that they all use to clean and work on projects. The girls (I keep them every other week) were particularly irritating and didn't want to do anything. I never have this problem with them and my sister had surgery earlier this week so I took it upon myself to try to turn the table and get cooperation. Well I am not a screamer and I have a different way obviously of parenting (I have to remember I am not their parents) and my help wasn't taken as helpful I guess so I was shooed away from their room. So I began to vacuum the wood floor upset already even though I didn't need to be. But I could hear my sister and her husband screaming their demands and disapproval to the girls and I couldn't stop the anxiety from taking over. I turned off the vacuum and went outside because I was pouring tears and just felt my whole body so uneasy. My sister came out and said are you trying to get some peace and quiet and then noticed I was uncontrollably crying. She immediately said you don't have to vacuum. I told her I liked vacuuming and then she said it's ok Murrey was just telling Miller to brush her hair and she doesn't like it and then went back inside. She doesn't understand why I lose control and for me it's not ok. It's taken me roughly an hour to get myself calm and I feel like I have run a marathon. I just prayed and swayed...Please Lord help me to not have this reaction in front of all these family members. It is embarrassing and I don't like it at all. I really hate that I am not in control. It scares the kids. It confuses my sister and her husband. I just want to go to my room and close the door and shut down...but I am not home. This too shall pass.
  16. Pam you make so much sense to me. I can just simply relate to you. Thank you for validation and reassurance. It means a lot.
  17. Pam I feel the same in many ways like a bi-polar yoyo. I go from happy/inspired/positive to sad/angry/depressed/feeling worthless and negative in the snap of a finger. I never know when something may switch my emotions. I wonder how many go through something similar. Not that I am not so grateful to be alive or don't see what is positive in my life and love to give my support to others....it's just emotional diarrhea. It really is exhausting.
  18. I was so bad at first...couldn't walk, stand straight, nauseous all the time, vomiting was common, patterns moved increasing my central vertigo, sometimes I felt like things were moving around me or I was moving around them but was really still, I couldn't look at walls with any texture or pattern because I felt I could fall right through them, I could not balance with my eyes open much less closed, in fact when my eyes were closed I couldn't tell where I was in space (right side up, up side down, sideways, etc.), I also had and still have a really hard time seeing in the dark or rather balancing (learned to balance with my eyes at PT), I also saw things (hallucinated <--- I have a hard time accepting that) in the dark like whispy almost ghost like things...they were always white or see through white and moved like the wind was flowing through it really slowly. I also saw my white cat everywhere lol even though she was not there. It took close to a year of PT 3 times/ week before I could compensate decently. Now many times I am in control of my balance. Big stores, tall open stores, malls, crowds, loud noise, night, not getting enough sleep although I feel like I never get enough, being put on the spot, headache (often), heat, a lot of visual and auditory over stimulation, I could go on... affect me and what problems I can have because of them. Balance is one of them. I can't run but I can walk on a treadmill now which I couldn't for a long time. I fall easy without any warning due to all sorts of things...a bump, uneven ground, a rug, my own feet/shoes, stairs, the list goes on lol. I can drive...this confused many people around me but because I am sitting and in a small area with my seat belt on I feel more grounded therefore way more in control of my body which means better balance though I really need to be alone and I need quiet (I am now extremely easily distracted). Some days I feel pretty good and others I have lots of issues. If you haven't had vestibular PT yet that would be my first suggestion and repetition of balancing activities/excercises. The more you practice the better your control. I don't have any answers for you about if it will go away or not. Good luck. Learn how the human body balances, what parts of the brain/body/senses play a part, and work on using what works the best.
  19. Wow Russ that is so great!!! Neuroplasticity. I hope you enjoy and strive every moment 🙂. You are a piece of hope for many others who will or have ventured here. So glad you are doing so well!!
  20. I might have to look that book up lol. I say I work on that probably every day...it is totally against my before stroke self to not give a %<[°[]]. I have learned to protect my own self worth and strength in a way...I try very hard to not take those negative responses to heart. I know how very sensitive to them I am and how it can make me second guess myself or feel worthless. I just don't want other people to dictate how I feel about myself so I am quick to be protective. Sometimes I try so hard to explain...I have found every time to be futile. Up go my walls. I am now pretty anti social, quiet, to myself, and do my best to avoid otherwise. It sucks in so many ways...It also sucks that I know I am more sane this way. I have to remind myself often that I don't wish for others to really understand for in reality that would mean they have experienced a stroke too. At least in my world.
  21. Hi Crystal and welcome to this great support site. I am so sorry you have been through so much for so long without accurate answers that could help you get your best support and health care. I can only imagine how it has affected your past years. Grrr just so frustrated for you. I am glad you found this site after some actual answers. I think you will feel very welcomed and at a place that offers understanding to those blips like you explained (the Dr. floor). So many of us have been in that exact circumstance and very much relate. I actually was not diagnosed the night I was rushed to the hospital by ambulance and was released less than 2 days after admitted. I know how I was affected and like I said can only imagine your situation. I was finally diagnosed 2 months after. I am also so glad your brain bleed wasn't any worse...they can be so dangerous. You are in a lot of ways very lucky. It still doesn't make up for all the mistakes. I hope you find some more answers here...I know you'll find a lot of great people. BTW MY name is Tracy.
  22. I'm so happy you have received some real relief. I have kept up with your MRI ordeal and now having painful side effects. I hope you got some much needed rest not to mention just breathing, talking, eating without so much negative reminder. Hoping you will feel much better soon.
  23. BTW it's a girl!!!! 💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗
  24. Kelli I feel so much more ok when you talk about the same issues I have too. I would never wish them on anyone but I feel understood in a way most can't convey. It's like when I tell my parents or my family that I am really tired in the middle of the day...it's not me being lazy. I am exhausted at times. Like tonight...its midnight and I have a horrible headache and I can't relax. But I have been away from my quiet room at my sisters since July 4th until yesterday evening and today I went with my step mom to my nieces gender reveal (she's pregnant) and I am literally spent....probably for 2-4 days. Thank you for getting it.
  25. I concur Pam! Thankfully, I fell asleep just a few minutes after I wrote my post until 5:30 when I went home. Slept in my own bed, got some kitty love and yes found quiet peace. Thank you!😊 Edit: I am so sorry I meant Sue.