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Stroke Survivor - female
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About SassyBetsy

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    Chief Mentor
  • Birthday 10/10/1963

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  1. I went through med trials for pain killers and found a combo cocktail that helps. I also get spinals with RFA Anti Ds never helped but I was groggy, nunb. I am going to see if I am a candidate for spinal stim. Honestly this pain is hard to stop. I am going for MRI to see what happened in my brain. There is hope. Keep open and try options. Whatever works. This is hard I agree. But there is some combo out there that will help.
  2. Yes Asha worry is my form of planning and scheming my way around things as if I can get out of MRIs! Yes Sue you nailed it!! And I too wait to hear about Big C which runs heavy in my ancestors. Holidays here meant advocating for others, visiting patient friends confined in rooms. My afternoon CNAs bought me a Santa gift. A red turtleneck shirt with white glitter reindeer, merry christmas words and design. I love it. I do have days I feel Im on that highway to hell...painful days. But I agree life is about connections. I am never alone here. I have good friends here. But ya know me, I fight when I am mistreated or I see mistreatment. I am told speak up and believe me someday I will see fruit.
  3. Mike dealing with pain is exhausting. Sleep is good.
  4. My Best Best Friend

    I need an echocardiogram, pelvic MRI, RFA Spinal, brain MRI again and I am feeling scared and overwhelmed. I will do it but I feel invaded. Alone. But my best friend lives states away and is my lifeline on my phone. We grew up together since kindergarten. We know our histories. She is my sister. It helps to have her inspire me when I get down so many here are cruel. she wants me to live with her but she is the country mouse so we worry that I would miss my big teaching hospital care. so..... Pain team suggests spinal implant stimulation. I need a screening process first. I am scared but I hurt still on the meds. I wish I was normal. I do not blog because I am busy coloring. My hobby consumes me. I sleep all the time too. But I love you guys and hope this new year brings all the best for you. I am self absorbed now sometimes but I appreciate my best friend and my Son who love me back to life. I live on the border of life now so I am in a different place. I am useless but try and love those around me now here in this institution of suffering and healing. I am grateful to see 2018 but it is a foreign place I was not prepared to land in. I will do my best to do all I am required with help of grace. Best hugs to all.
  5. oh yeah, my neuro suggested reading about sleep and sleep deprivation. From what I read, the brain is busy during sleep , and sleep after any learning may get that info filed away and enhance using that info. So our sleep hibernations may be the biggest rehab sessions of all perhaps the time when new neural rewiring goes on..... so I try and sleep all I can
  6. I saw my neuro when I was having memory issues and involuntary shaky hand movements. HEsaid that deficits become more pronounced with my lack of sleep and suggested I get more sleep. So I now notice how things are better when I take regular naps. It is not being lazy. It makes everything better. Mood,reasoning,less dizzines,more energy, better balance. All problems are more pronounced when I am tired. If I do not sleep then I drop off where I sit. I think you are right Scott.
  7. Thank you guys. Paul those are all good ideas. The daily diary one I try to do in a Planner. Sleeping helps my mood and my memory. I must get enough of both. Thanks for listening. I need others who understand.
  8. Who is your go to person?

    They asked me. They is the Ca Dept of health. I said I complain. They said yes you must. The lady said I think I worked with you before. Yes. Then I said what I called to say. And said Yes I told everyone. I go to everyone. Who can do more than listen? And yes thank you for acknowledging I have valid concerns. Then I was told I may not get what I want. ok here the waters go choppy. In my mind acceptance is only when all options run dry. Sure it may not go my way even if I have a valid concern but I Never GO GENTLY. It is because I was a resource for others. Now for myself. Never be silenced. Keep on doing. I am tired and ill. I got 2 hours of sleep because roomie said she wanted coffee or to eat every 30 seconds for hours. She is angry and yells. Dementia is too cruel.
  9. Thank you Asha, missed you and this site as well. Good to know Keli. Sue I have pros and cons of care but I need help and I am blessed by the loving ones here. This site..you guys have been my support while transitioning amd surviving. I have one great friend out of state who opens her doors to me but I deal with my medical stuff and CA is home near my son and still absent daughter. This is home. And yet Not. But you friends keep me going.
  10. colonoscopy tomorrow

    I feasted at a casino buffet on thanksgiving with family and friends. I loved time with family. I felt more distant from friends. My new normal is being a patient. I need this after blood found in a stool screening. I must be put under for it. I am afraid. I need a D and C they say. I wonder if all this fuss is necessary. I worry about risk of going under to screen for cancer. But I must fight. I am scared. I have not been on here for a while. I got addicted to an online game. I am glad I own my time again. The RFA helped but pain increases. Now concern is that someone will touch it. I hate being a patient. I miss my old life so badly. I cry. Inconsolable wasted tears. That is over. But things are hard. I just needed to come here.
  11. so Then are pain meds out for you? seriously I never took pain meds for long in the past and rare...but now I have been on every opiate up the line until I took Opana and it helps plus oxycodone in between. I have taken meds for 2 & half years now almost and some relief. meds are still necessary with this spinal ablation stuff. I still hurt so visualizaion relaxation are big deal. No I am not high or euphoric but I drop asleep. But pain keeps me up too. overexercising means more pain. Best regards congrats celebrate clean sober Mike. Yes it takes forever to get doc appts!!
  12. sheesh we never whine.....we share.
  13. I totally relate. I just urge you to not be afraid to seek out help,relief,understanding from a good pain clinic. It is not what we can tolerate...we are not wimps....we endure much more than anyone can fathom without sympathy.. pain changes one...changes chemistry...stress hormones increase ..we live in a hostile place,our own bodies, daily ptsd because pain follows us. we are strong, brave, full of hope, daring to seek relief where others will not step....we are inside ourselves,pain is isolationg, so we need to tell this to someone like a burning secret please see me please see pain please share strength my best memory now of this was when I was sobbing in pain without enough meds in the hospital and the nurses were hostile because I was witchy and a doctor held onto my hand and arm telling me she heard me, believed me, and was listening,and would call my pain team. I am not really the person they see in pain. Those that know better are out there. I know my body,my mind,myself...and I deserve respect that I can advocate. That I can be scared and strong simultaneously. I understand you sister. I suggest music,aromatherapy soap,candle,oil, some comfort item like blanket...i use big scarf so it isnt obvious...distracting thing like game on phone to get thru a bad spell. no one desires to take meds, but do whatever it takes for a life you can live. no shame. this is not punishment,not payback. This is a journey that is difficult,be proud we can be up to the task, we need eachother. Thank you Steve, modeling strength,courage,no shame.showing me how much I need a mentor,buddy, listener. pain is like entity that overcomes me. but I am in here, same woman strong,loving and so are you. bravro for reaching out. we hear.listen.care.
  14. My pain is from brain stem area, not thalmic...which stumps them...and they think thalmic area must be involved......then say nope.... parasympathetic stuff....my pain is burn stab ache num zingzapp on right leg. Without meds I howl scream cry beg swear.... with meds it is reduced 50%. without spinal I do not walk much. with spinal, I go on vacations. Keep trying...you will find what gives you quality of life again. Investigate....perhaps meds only can give limited relief...see what else... yes it is scary and hard... but one day you will find some freedom from this pain. I know how this is. SNRI did not help me. so I did these spinals...last resort. I may do pump like Steve someday.
  15. going for spinal#4 in oct. yes it works but spinal wears off. i get a life due to opiates.