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Stroke Survivor - female
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Everything posted by SassyBetsy

  1. SassyBetsy

    Scott no one understands my aversion to pants but you. It hurts like no one knows. All types of hurt. Then they say, oh that didnt hurt so.. I hope you seek treatment,have hope. The RFA helps me walk more,helps all of it. IT never stops tho. Be asleep happy or wake up to a reality of pain. I see you my friend. It is not easy to enjoy life like this but you know wife loves you around if she keeps you in soft jammies. I will pray answers and peaceful relief arrive.
  2. SassyBetsy

    Dearest Sue, Now is filled with challenges, obstacles that are not deserved by one who lived a life as selfless as you did. But somehow I have a feeling that Ray lurks in the background, just like that movie, an old black and white....what is it....anyway true love lasts to give strength, not misery,yet we long,and miss happy days. My true loves were my children. I dream they were little again. I rode in a van I used to have. Miserable ride. I did not cry though. I miss driving, freedom, my children, all of our outings Being a Mother. All those vacations,still never enough. Sue Enjoy Now with grandkids to give them memories,stories of 44 years. I see you and Ray early 60s, over down under,riding trains in open country, buying a little fixer upprer, making a life! Wow! I feel you,Sue. Surgery is terrifying. But follow your zensibilities. Lol. Hey look, I made up a NEW GOOD word. Recovery takes planning. My old professor was a counselor,taught me how to work with my school teenagers in groups,and put us through it. She told story that we need comfort. She said she had a favorite teddy bear. And when she had surgery she put her teddy bear on the couch along with her favorite throw blanket. She talked about how it was there to comfort her. She was very happy just see it when she got home and it helped her soul which helped her body heal. She reminded me that we are more than just what our bodies are. We are souls. I think sometimes I forget especially on my body is causing me way more problems then my soul is. And I guess I should be grateful that I am not as concerned about my body when I am taking care of my soul. She taught me that it was okay to be vulnerable to be afraid and to be comforted. You see my family it was always about not taking pain medicine and being strong I'm not shedding a tear and not saying that you were fearful and everything was just fine. That is a lie. Things are scary, hurtful, lonely in real life. Bodies hurt,souls hurt. It is no sin to want pain relief. For all that hurts us. So be comfortable.do what you must. But you are a warrior too. God bless your procedures. You give lots of love so it will return to you.
  3. SassyBetsy

    Pain from CPS is unlike other pain. Ken it is great you search. Good luck.
  4. SassyBetsy

    I will miss chats with Denny and will see him on the other side.
  5. SassyBetsy

    I am on 2 oxys...oxymorphpne,oxycodone and lyrica 200 mg 3x day,every 8 hrs...i need spinalRFA,drugs not help. Never give up,there is help out there.
  6. Those dang insurance and long term care issues!!! They throw sand in your face when you need them or they pull you out of water,toss your coin. I had to appeal repeatedly and when I lawyered up got a hearing then the judge saw me and saw reality. I pray he has plenty of supportive friends to pray and one special one to send gift boxes over the years like mine who gave me my drawer of fuzzy socks! Be yourself for him and let him be the new version as long as it takes to reemerge or rewrite, or whatever. Share what he gives out,understand what is a mystery,love. You will make the difference. We know.
  7. SassyBetsy

    Thank you all!! I am crying with joy! I am full of fear for my legs. I look there Becky and see those beautiful hands of light and words of encouragement and draw strength. If I say I have been so out of it to blog then there is how wrong this is...me silent,not complaining???LOL! My spirit is lifted and my gratitude list grows. May you all receive double back on your dance cards!!! Keep rockin
  8. SassyBetsy

    If you find some soul mates then who cares about demographics. Look at hearts and for supporting you. It will be refreshing I am sure and you bring so much energy wisdom and fun to the mix! Remember who we are makes a difference!
  9. SassyBetsy

    OH Maddo I guess we will celebrate anniversaries together!!!! I used to run. When my balanctte was gone I was in a chair. My riight hand is numb but functions and is cold weird but at first I could not write. I got copies of crossword puzzles to write in.
  10. SassyBetsy

    Thanks you guys ....You all are family....you listen and read...and hear and care.....I read you all too. But lately very drugged and not writing our is it thinking. I was ill lately and could not walk the same and value my leg pain or not. I miss my mind My love here at the snf lost his sight he woke up blind.He is inspirational. Tracy thank you...your support sustains me. You get me hear see understand. Thank you.
  11. SassyBetsy

    I have driven down this road for my spinal stimulus stuff and various meds....trick is to call your doc and the doc finds out what wording to do the pre auth. It can take time. Years for me for the stim months for meds. So persevere. Keep hope. Keep squeeeeeeking the squeeky wheel.
  12. SassyBetsy

    I had lacunar ischemic In pons In tiny blood vessels I have read are teeny weeny. The ER did not give me TPA. I begged for it. Pleeeeded. They said it can cause a bleed or death. So much for the FAST hype. I was there in the 4 hr window too. My symptoms were confusing.was it really a stroke. Basically they watched. I was taken to the closest hospital not the best. I changed and made sure I live by the best. Oh that hospital was the stroke trauma center. They denied me in house rehab. I went out patient. I had been a candystriper in that rehab....way back in the day...my daughter also.
  13. SassyBetsy

    Cancer. Really?

    I sat on the table with a pair of leggings on and a thin robe undone clutched around me like a shield warding off the words no woman or man wants to hear. And No person with CPS can tolerate. The radiologist wants me to schedule a biopsy ASAP for 2 suspicious spots in my L breast. I said BUT I am going to have an electrode implanted. Then the following words floated in the air hovering over me making sense no xsense then just being: "Oh you people who don't want to live another day in pain are hard to convince early detection saves lives." Wait what?So I almost cancelled this appointment for mammogram redo plus ultrasound because imagine they removed the wires connected to a battery to a computer program HELPING me be comfortable for the first time in nearly 5 years. Who else knows what pain for 5 years feels like or lets word it this way who else did not want to live another day because of pain? We are a real group of human beings. We who do not want to face another day.... How about this: "We who face each day in pain.Despite pain." And hear this from the mountain top!: I have had a mammogram EVERY year since turning 40. Including going to a cancer treatment center at medical center at university hospital at the best machines. Every year even since my stroke. I have vestibular problems. I find standing and balancing difficult during the test. I ask them to turn off the 2 tv's with imax relaxing movies that make me wanna puke and fall over. I find that squeeze extra horrible on my numbish yet not painless right stroke side. I do it for early detection. I watched family members care too late. By the way. I also took my blood pressure medication yet here is stroke at my side every day with pain every day. So last year I found a necklace getting a mammo. This year I found suspicios probably not cysts in 2 places. I want to cut off my breast. It feels contaminated now. Even before the verdict. But the conversation was that pain was not an important issue. She said it with a smirk. Ok please let us be honest here. How many stroke survivors have not been able to live with the pain? Suicide is not something people actually talk about. So please excuse me if I feel strong and confident that I have continued to live the days given days required in the pain required. That is not scoffable. I did not allow her to insult me belittle my pain experience. I said I wanted 2nd opinion. She showed it to department head. Fine. Also they insert a tag on the thing that proves to be beneign so in future no one will biopsy it.great.efficient. Yep unfair. All my head screams. This pain is punishment enough. Will I be joining another support group?Hey is there one for those extra achievers with multiple problems. I realize I must take care of both. Can I fight cancer while in pain? Can I get the biopsy?? Alright. Indulge my mental wanderings. The wires were removed. The burn returned. All that pain. I long for meds before due time. No one sees how it hurts unless I call out but then they scold me.be patient. Wait your turn. Be stronger I tell myself. To go in public I must shower. I did 3 weeks trial.3 weeks sponge baths.3 weeks washing hair in the sink. So I showered.sitting. But every pain felt. Oh I went in right after pill so covered. I was wheeled over to the showers. Walking hurts Going to my bathroom hurts Walking the halls hurts Sitting hurts Pain surrounds me. When it hurts I hold my breath and then my chest hurts and they tell me Breathe! Getting out hurts. So I do not schedule. I wait for electrode surgery day. My day is this...moving and standing very little. Coloring and music to help me endure it. I not visiting. I hurt.I not having Xmas but I celebrate by prayer and communion. Alive. Blessed to live. But there is a life with comfort.somewhere. I cuddle with my sherpa xmas blanket I snuggled with in the car going to the old xmas lights that I took the kids to.
  14. SassyBetsy

    I am fine. It is not cancer and that tissue is flagged so next year no biopsy on it again. I feel I have been given a gift. The other mass is gone so prob a mistaken pix. I will always go@!!! SEE YOU NEXT YEAR MAMMOGRAM!!
  15. SassyBetsy

    I am sitting in a diaper.

    I have a sinus infection,yeast infection,fungalinfection,and need to use a bipap machine but cannot breathe with my nose right now.... Nutshell of misery is enduring the virus that I am hosting in my body My body that feels constant pain in my right leg for no reason except just because ...and it is not a belly ache as some mock. NO it is burning at the stake pain, a live amputation. I Do So have a good pain tolerance!!! I have been through labor and childbirth and a C section. Ok boys try being sliced in half to pop out a baby and then being stitched inside stapled outside and then pop a baby aspirin so I can breast feed safely. And foolish women sing the joys of experiencing the natural experiences so I did I until those double peaking contractions that failed to do much.....yes pain and me are old buddies. This nerve pain is childbirth Godzilla steroid style. It is dental pain wile your finger is stuck in a light socket. Ok....so I am getting an implant to turn it down....does that prove it is a not normal pain yet??? So then my incontinence issue is not a thing except the stroke added more weakness so I wear a leak prevention pad....my ego identity is involved here... So when I got to snf, they did not offer pads,but had pull ups or diapers. It took no time to love pull ups. Easy convenient yet often leaky but ok I missed undergarments but never had to worry about lost laundry.... But the home does not proedvide pull ups now I cal)led the ombudsman twice. She said the home is obligated to provide incontinence supply...and it did. Maybe not what I wanted but they did not have to provide pullups or pads. Not even maxi pads. So I spoke to my PC, she understood and sent an order to the medical supply Co and......I was happy until it called me saying they do not deliver to nursing homes..they provide stuff. Ok. So I will. Does any one get this get me? Should I be taken at my level ...but they say all the same.... No one comes to change me See they said i am independent not incontinent. What dictionary are the using? I cannot talk anymore to statues. But I am sitting in a diaper. I am here. It falls when I walk. Comes off when I pull up my pants It sags to my knees and it is dry. So they came in and said you need larger ones. I said I am swimming here. They brought bigger ones that are prettier color but when we put it on it was nearly a one piece bathing suit. So back to other one. I will adjust to this. As I always do. But I fight to not be in a wheelchair. It hurts to walk so bad. When toilet was out in my room i used commode. Not a bed pan.not a diaper. So they told me to change myself. I need coordination. I cannot do it. So I will purchase some myself for outings but here I am in diapers. Why is my identity fighting this. I am having problems yes.
  16. Maybe he gets worn out and needs a day of rest in between.
  17. SassyBetsy

    My one word is life. Only our life. Only our story. Only our experience. But lately we see the value of sharing. End hiding. And each has value. Forget worldly concerns. Seek. Aspire. But value life. God bless you all.
  18. SassyBetsy

    My Christmas miracle

    After hearing the radiologist insist I return immediately for a biopsy my gut reaction was of course THIS is not happening. I asked for a 2nd opinion. She returned and said the head of the dept. Of this prestigious teaching medical university hospital in So Cal_ said two areas of interest and one should be done immediately and the other area could be checked at next available appt. Wow. It sounded serious. They even scheduled and all before insurance pre auth! I cried. In front of the student intern. I asked for a kleenex as I covered my face and silently unsuccessfully held back waterworks. I never cried when I was told I had a stroke. That came nonstop later. But the idea of csncer destroyed me. Shoot after losing everything in life do I seriously still need hair or boobs? And I hurt. The electrode trial was done. I needed RFA as I wait for the implant procedure. Yes I decided lickety split to just DO it. Relief is worth it. So I went and the tech took another mamo on another machine I sat on. The doc came in and said the three disagreed with what they saw. Then she returned and said they could not find that area again! What?? Apparently it was some tissue mistaken she said. I thanked Her for patiently answering curiiosity about the procedure. She apulil. peared to happily talk about her work. The intern was helpful because it was difficult for my vestibular system to climb in the chair endure dizziness and then the kind doc could not find the thing! She said it was too small@! She did though and clip a flag so next time it would be know, it was checked.They showed it to me when we were done. WHITE dot! The doc expected it to be B9 And in 2 days she called me and said it was!! It was painless. They numb it up A tiny slit is made for the biopsy device and then steri strips are applied with bandage dressing. Mine bled and came off so nurse reapplied them. They lasted more than a few days but then fell off on oys own. A tiny pink scar remains that I strain to see if i should vicitg a topless beach. I celebrate life this New Years. I exchanged gifts with family and friends. I share with people here. I helping a woman get a free cell Phone here. I hope still)going on.opp09) I must share. I also wearing new shirt and navy blue nail polish and living stylish. Coloring with expensive pencils from amazon deals! Still pain. Endless. But life is more than it
  19. SassyBetsy

    Horrible to kill the hopes of desperate people using snake oil treatments. There needs to be a watchdog committee who exposes the chartltans!
  20. SassyBetsy

    Oh? Is it used in united states?
  21. SassyBetsy

    Tarina I suggest going to the disability services at school for accommodations such as extra time on tests and be encouraged. I too was identified by my degrees and cars. I still miss them. I am more tha n those things. Be encouraged stay stubborn. It is different for everyone. Hold onto hope.
  22. SassyBetsy

    Dyslexia is more than a visual problem. It also applies to auditory and language stuff. Yes I feel your pain. I continued even when I learned how my brain stem stroke had caused visual and language problems. My speech therapist recommended a big cognitive puzzle book that exercises our grey and white muscle. There are good ones online too. I got hooked on online scrabble. We need to retrain that is tough. Harder to do than the first time. It is harder to be challenged with those baby steps than the bigger stuff we really want to do. Take steps back breathe deliberate how what we exert our energies on. I am stunned at what stroke robbed from me and amazed what my brain was capable of back in the day...shoot proud it was better than i thought. And every now and then I do a puzzle in a book. Did you know my podiatrist has a few kinds of those big puzzle books in his office with a a pencil tied to them with sticket that says DO NOT REMOVE. Isnt that neeto? Well cherish what else our amazing brains can do...
  23. SassyBetsy

    Breast Biopsy Today

    Today I must be brave. The stroke pain continues and they say oh shush buck up. I need pain meds every 4 hours. It hardly keeps me happy.
  24. SassyBetsy

    I lose my train of thought, fumble around for words, make a funny sound when saying f words, and I swear I talk super slow. ok so maybe I talked too fast before, but I said yes speech group helps. Just sharing our stories helps, and chatting too. Just because I can talk, do not think my speech is what it used to be. But nothing is changing. But after they interrupt me,finish my sentence wrong,or twist my idea,and I get upset saying wait for me to say this right. I had a stroke. They say,no, you are fine. But how to fix these things. step one.be calm step two.be calm step three.be calm. once flustered, I bumblejumble my name and address. Or I smile nodding wthillbilliegoat, what does it matter let them think for me and so they go away feeling like a genius when they were stooooopedos hitting the wrong target. oh, those best ones are on the phone. they transfer me. I tell the script more times than an FBI fugitive, often really reading what i need to say. ..but people cut me off. transfer me. oh and those conference calls. they say please hold while i call that office to verify discuss report and speak when they come on the line. ok once,they were not doing what I needed and I was shouting listen to me,can you hear me,this is not helpful,you are messing things up, can you just stop and listen. and that was me being creative because my mama washed my mouth for shut ups and that is 4 letter word to me.SHUP. Anyway,the nursing staff came running to see if i was ok,what is ruckus going on. As I recall, I hung up just speechless in my state of mind. Gotta love it when they ignore me,like I speak martian. Especially when I say No. And the just keep asking. maybe a tad differently than first time maybe exactly the same. No. No. Can you hear me? Please listen to what I said. Can you respect me as a person who made her choice. No. Mama said No Means No Every Time. I loved that and use that on all kids,no matter their age. So they think my stroke ruined my mind, but then they expect me to be brilliant. Make up your mind.
  25. SassyBetsy

    I tried it out. It helped. So now waiting for insurance and scheduling....prob in Jan or Feb. 2019. So by my 5th anniversary of stroke and CPS I will have my electrode implant. Something I said I would never do. BUT pain won. UNCLE. uncle uncle. Pain meds only help the edge off but not eliminate the burn. Most exciting was talking to my neuro pain specialist and the electrode rep who assists in programming and stuff stuff all unknown magic my head spins on. The how is an electrical signal that scrambles the pain pain pain message. You do not feel the signal. Then another signal is one you can feel and turn up down to massage or tingle my leg to distract me on bad stuff like sensitivity or spasm times. And these people talk my language. They encourage me to describe and say we can adjust or see this or that. The removal of the leads was this. I stood up and he pulled off that special bandage AND the leads were taken out and poof all done. I wish the surgery was going to be easy. He held up fingers showing a 4 inch incision. The lead with 8 electrodes on it or wires must be sutured so they do not move. They are anchored to facia. Time for google and diagrams. Doc said you will be better in a week. Hmmmmm..... Ok it takes a few days to settle and heal. And there will be post op pain. He said to get the spinal block so it will help with the pain. And what about the other incision for the battery pack. Anyway .............. I think ahead. Summer. More PT Me on a tread mill.balance training again. Walks and maybe day trips with son. Because they see me take pain meds they think ok you good. NO! that is not enough!!! The severity and intensity is 10 plus plus plus plus.are you understanding. So there is no choice but to go to radical implant surgery......scary. but not as big deal as I think. Just healing sutures.that is hell enough.