Stroke Survivor - female
  • Content count

  • Joined

  • Last visited

  • Country

    United States

About SassyBetsy

  • Rank
    Senior Mentor
  • Birthday 10/10/1963

Shared Information

  • Stroke Anniversary (first stroke)
  • How did you find us?
    Google Search

Registration Information

  • First Name
  • State
  • Country
    United States

Recent Profile Visitors

3,961 profile views
  1. yes I recall my hospital had make csrds kitd. Lots of fun.
  2. When I am in pain I am assertive. I need a Lyrica when I wake early and I get the Tingles hard and even lose bladder control. I am embarassed uncomfortable and mouthy. They start talking policy this and that so I throw a huge hissy and call the ombudsman crisis line and the bosses of bosses of bosses. I keep my head and never cuss or throw things although I threaten to throw up. I do not want to appear mean but I certainly want good service. I feel better then.
  3. I like getting into that zone where I do not notice time pass and I feel completely absorbed into creativity and being. That's living.
  4. I asked my neuro what if pills stop working and really I suffer before RFA that is not permanent. He told me there is pump to spinal.a spinal implant. a brain implant. He finally declared to me when I said what would you tell your daughter. He said implants cannot be removed or can damage more or not work enough/not at all. He said the pump thing reported high success. The RFA has to be repeated but so far has helped me plus on meds. I wonder what is next. I am thankful to be off antidepressants that neither made me comfortable or happy and I experimented enough to finally be numb and unable to enjoy what should be enjoyed. It did not work in a long list of failed pills patches topicals. I have tried visualization and relaxation praye mindfulnesd meditation massage positive everything, precious healing energy stones(my fav is my huge rose quartz ring and my purple amythest large heart pendant which are pretty anyway), nutrition,teas,vitamin minerals herbs And oils you eat smell wear soak in or spray around. One says rest more another says exercise more. I open to all this stuff. I did chinese healing drink and paste and humidify. How do you fight phantom pain? 3 years. my best things are what I do today. Opiates RFA distractions sleep my rosary my family.
  5. really cute!!
  6. Yes music is like a dream!!! I listen to celtic flute and violin and others that sound ethereal on my phone. I want to go again to symphony that was the greatest experience. I have normal hearing. I went for testing because I had earaches from sinus trouble. yes sounds feel physical to me. Like inside my guts for real. It amazes me. But I am not throwing any staplers. I do ask to hear songs repeated in car which I stopped doing because I realized the piece was not having the same impact on others and was in fact annoying them. now I ask if they can give me way to get the music. Music feels sounds like colors or movement. Very synesthsia like. It started right away when I fell in love with movie music. I listen to same music to sleep. It is a good signal to promote sleep and I enjoy it.
  7. LoL all in my head too! I definately blurt. I am serious but I am sarcastic and love datk humor. Thankfully my son always texts me the same. My neuro is serious correctly understanding my laugh is defense covering hard emo coping so I forgive him for not smiling. I probably would get offended if he seemed to take it lightly if I was not in the mood.
  8. oh boy you are right!! When I lived at my home way back whenI had a pain doc that would huff around and insist pills woulnt help me but refused to try anything starting with oxy. She got angry and I felt she disliked me and I told her so and quit her. But in nursing home they had to deal with my pain in living color nonstop like I do. Anything other than a shot looked tame so they gave me oxy and it helps. I think of all the suffering while I tried one after another that did not help. And they seemed to blame me! or see me as weak and whining. or drug seeking. BTW I do not feel euphoric on these drugs now. I just feel less pain. my leg feels burny icy but not painfully. Funny you say Z pak cuz I just finished real antibiotics for 10 days after a 3 day Z did nothing!
  9. Oh I love talking to my kids about Enclyclopedia books and libraries and no cut and paste on typewriters. Then I realize perhaps my generation has seen more changes than I think about. I feel old then. When did that happen? But one thing at my year 3 almost is I do not read stroke stuff much. I watch movies and I do not put anything worthwhile in my head. I do not stress about another stroke although I do let them monitor me. thereason why is not haunting me and the guilt is not there. maybe time has eased the anxiety. Not much I can do now. Here I am. So I get about the business of living. I never thought I would.
  10. CPS is more like phantom pain since the flesh the body is fine and the intensity of pain originate in the thalamus brain and possibly central nervous system yayablablah and so talking about addiction to the drugs to me is hilarious because when after 3 years of pain will this pain end so I can ditch the pills. So I am doing this RFA which NoOneKnows. They think it is typical spinalepiduralthing for a backache whis is excruciating too but not cps. But for 30 min they zap the nervebundles with electricity in the prayer that this bundle quits this brain leg stuff and they say "reset" to describe the goal. I have had 2. Will 3 help or 5? my really cool doc who gets this pain once demonstrated to an intern to watch what I say when he touched my leg where I hurt. I said it burned me. My leg burned. He answers that he cannot answer my questions. I must be sedated with some iv you wont remember because it is horrible to touch the nerve bundle. But I leave with a tiny circular bandaid in 3 places and hope to be normal before pain. Opiates give me time to live. I took everything in the list pills or patches searching one at time until I took Opana and it unlocked the door to relief. with no sides except sleepy maybe. And I take cocktail. Lyrica and 12 hr oxymorphone with oxycodone is my daily bread. I can take a shower walk around go out dinner and movie. But pain is )ess not gone only tolerable. I do not know how to rate backgrou,d pain. I say 7 because they take it seriously but not alarmingly. Pain is always there.
  11. wow 2 lists so simple why didn't I think of that!It certainly would help pace the appt and maybe address some by phone or email or nurse. It seems we always run out of time at the pcp. Then others like my dermatologist take time. Yes practicing them is a good idea. I have a problem running out of air during speeking. I would benefit by practice sound better less gravel voice. In therapy she says keep your voice forward lol and I say what is that? so I have to be louder clearer. They discharged me from speech. I get practice lol! But my new pcp is sending me back. I could have learned speaking techniques a long time ago. Linnie you have come so far!! Yes once I did go with others because I cannot keep up with fast talking or cross talk or joking. So I needed someone to advocate too. But Yes so degrading for adult. And in the end I just go and deal with it. Thankfully my medical center now prints out summary of visit including instructions notes meds. They are online but I not use it because the summary and phone suit me. It feels better to go alone. Scott do not feel bad I am a complex patient too. One really bad doc that my insuranceco pulled me from told me to my face that I am the kind of patient no one wants. Now I go to overall professional docs andan all is well except for here at the Home who is a dufuss. Thanks for all good sugestions for future appointments!
  12. Carol I am so sorry you were lashed and I hope you report it to Steve because this is Not the purpose of this site. Yessir Sam all you said is not just baloney. I feel more intuitive now less tolerant of the way I am treated as invisible and nothing. It would be much easier if all my memory prestroke was gone. But I remember important people who have changed towards me. I too was a professional and a matriarch of my family. I have dissappeared. These are not just feelings. I am no longer in my place in this life. Nothing will change this. I am not getting back that place of respect or my hard worked for stuffed. People tell me it will change but I did not recover back to where I was. I need to acknowledge this as my truth. Then I can address this in my life now. I can identify it as real and not me paranoid. I believe I am more sensitive and intuitive and I sometimes do not have a filter. I just have to believe I am still full of the integrity and all that is me-ness. I do not worry now about all this. I am proud of myself and who I am in this new life box I am in. I guess all we can do is be authentic and call out a spade.I accept them. I accept me. And I seek out balm and not toxic.
  13. We all have a bit of OCD and it is normal unless it impairs your functioning I have read. I worried over tics in my kids and my own obsessive thoughts things I worried or guilt. yes when I read about something I say oh that is what I have but I know it can be Medial Student Syndrome where I identify with all conditions so it best to talk to experts. But I love Google and it can help me find info to ask Qs.
  14. Sleep is our time for the brain to do lots of work. So think of it as healing time and do not feel guilty you are lazy because it is important brain work. Take life slower and enjoy our roses is my new mantra for this type A here. It will be here tomorrow and I just hope I will be around for it.
  15. Oliver Sacks the neurologist wrote a book about music. It is interesting what music is and does in the brain. I believe I need to listen everyday I like symphony