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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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  • Stroke Anniversary (first stroke)
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  1. 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.
  2. 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.
  3. 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.
  4. 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!!
  5. sheesh we never whine.....we share.
  6. 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.
  7. 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.
  8. going for spinal#4 in oct. yes it works but spinal wears off. i get a life due to opiates.
  9. oh yes but worse is when they believe it, clueless,no idea I do not do brave when it wracks my body mind soul and envy the downed horse, when others see my crying screaming help and they walk away off t some happy life. I get sick of explaining why I take two kinds of opiates plus lyrica and I still hurt. I was told I must get spinal fr relief. I was scared, it hurts, my doc will only do it if I get iv drugs to relax me, ease pain so I do not move around. I bucked he said. There is that horse term again. I must do #4 now. So no shame. This is horrific. I went thru 2 childbirths.....I know I can take pain. So when they actually say I am too sensitive, no tolerance to pain or anxious....ok pain makes me frantic..do not think it is panic.....I am experiencing a feeling like my leg is being amputated but I never pass out. I think it is more strength demanding someone see me, see this, and shame on them for no compassion in reality away from popular sympathy stuff. You owe yourself relief. Do not be ashamed. It is on them if they cannot be truth.
  10. 9I am glad for you. Yes, I agree ot is important to be able to go out, be comfortabe, live like you mean it. Pain gets in the way. And it is not about pain, tolerance....not like a contest, to see how much can I endure This is a real pain, a powerful thingy that changes me, sometimes vulnerable or<angry. So I encourage you not to despair or give up.
  11. Yes funny thing about stroke is an uncanny denial that we exerience and minimizing truths about changes we go through. But for me, the pain grew to intolerable quickly and I have a severe case of CPS by any other name. I get RFA radiofrequency ablation treatment at a major big teaching hospital in so cal. It helps for a few months and must be repeated and I still pray it resets the nerve bundles so the sensitivity and burning icy hot will subside. I take big doses of pain killers from my pain management team otherwise I lay in bed writhing screaming like something that should be put out of its misery. So I am miracle that goes to beauty salon, visits with friends, enjoys movies, and is an artist now i am not working in schools now. I cannot live without assistance so I am in a snf. Right before treatment I hurt badly. They put it to every 4 mo instead of every 6 mo. There is no shame. Get help. Suffering is silly when there is help. Docs who do not know how will say nothing can be done. I was in hospital and the average doc gives average meds which did not help, but then pain team got there....relief. I stopped screaming help me. so if you are not like me then there are pills patches physical therapy, and the spinals, and prepare for trial and error to find what is effective for you personally. Find your key to unlock the pain grip. But talk to docs, lots of them, yes sounding nuts to those that do not understand the pain language There is the pump too. Ask Steve. There is hope. Try and believe some relief will happen. After my treatment I go do fun with family while it lasts. I struggle but then I am normal for a while. My right leg is problem. My right arm is icyhot as if I took them out of freezer but not the stabbing aching burning alive leg. You are not alone and I agree, who wants to be on this site? but you will find others who got it so get it. And you will learn and be loved. This is comfort and acceptance here even when others tire of hearing you complain, there is listening and lovely understanding here. Welcome.
  12. Great news Mr. Pleasant. Keep us posted about cymbalta! Glad you have hope planted again!
  13. I agree with Dorothy, it is so important to be able to drive the wheelchair. She is lucky to have this new wheelchair and now all there is to do is Have wheelchair Will travel! Any trip is revitalizing...better than therapy lol. Do not forget a beauty salon visit to start with. Bless you for researching and sharing.
  14. Going to a doctor takes more strength and courage than anything. I am glad this one has all info. Now mine is at superbig medival lol typo!! huge medical center with a computer system connectinh access to all records. So my neuro corrected my cholesterol med dosage and also insulin before I went to specialist. He was straight with me about recovery in his forthright yet gentle manner yet he sent me back to therapy...still does...he knows his stroke stuff...the best of all my docs, and he told me straight up about my options for pain management. when pushed he said his opinion and reccommendations about each procedure. I am doing a spinal thing that helps and yet I still suffer as it wears off. I hope yours tells you all latest pain control stuff. We agreed that stuff you cannot remove like implants in brain or spine were not option for me not yet not evernot yet. but I can still do a pump,which is reliable to help over brain implants but I didnt hearit from him since our hospital does research in all that. So I want to let you know I respect mine and I hope you find one who really just gets it. My pain clinic is full of anesthesiologists with pain specialty who understand I hurt I reaally hurt. That was healing just to find docs who knew just knew the suffering that was happening. I know how important that is. I pray this is a new road for you, that you will find your heroes. I know what it is like to shut off withdraw be betrayed by medicine that had relief but withheld class doom pain relief. The doctornuttball said only one kind of medicine pill left to try and then I do not know what I can do for you. Lo and behold it was effective. So I get it that docs are afraid of treating pain with drugs that are both savior and killer. We are suffering though. We need brave specialists. I hope you can get to the biggest city medical place with researchers where top doctors gather. Lol, I had doc suburban in his private practice who pretended badly that he could treat me. So I root for a specialty medical hospital, university hospital. Keep hope. I know how hard it is. Truly. Know you are not alone in pain war. I hope you will find a good doc.
  15. thank you. In hospital, the pain team came finally, wondering why they were not paged. They said I was terribly undermedicated. No explaination why the delay, but the did fix it. I was grateful. I have vestibular problems so hospitals are scary. I am grateful they did tests to help me. But this pain is out of the normal scope.