Jump to content



Stroke Survivor - female
  • Content Count

  • Donations

  • Joined

  • Last visited

  • Country

    United States
1 Follower
About SassyBetsy
  • Rank
    Chief Mentor
  • Birthday 10/10/1963
Contact Methods
  • Stroke Network Email
Shared Information
  • Stroke Anniversary (first stroke)
  • How did you find us?
    Google Search
Registration Information
  • First Name
  • State
  • Country
    United States
Recent Profile Visitors
5,648 profile views
  1. Maybe he gets worn out and needs a day of rest in between.
  2. 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.
  3. 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.
  4. SassyBetsy

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

    Oh? Is it used in united states?
  6. 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
  7. 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.
  8. 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...
  9. 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.
  10. SassyBetsy

    It is about time!!! They make you earn every penny. You have a mother to assist in budgeting...you can and will be independent. AND CLEAN.
  11. SassyBetsy

    Dearest Sue you are the Most loved on this group and probably other groups too. Please never ever feel alone in this universe you are loved by even angels too. It is lonely to be aware that life goes on around us. When in in a way we stopped right there. But we are still loved by those we cherish Even if we do not see them Just like with God as I know you believe As usual your advice rings true I should put on some music to block out all my own pains. I too miss people who were once in my life.some passed.some just extinct. I too had been too busy caretaking my own family.my mother too. I was stopped one day. I have not replenished the support system either. They say to but....as anyone leaves any group they were relying on...I have left many groups that had to do with my children....as they grew older.they did other activities.....I was that band mom or dance mom.....then caretaking my mother....and my own group for me was going back to school but I was old.not a college age first timer. There are few of us but we are there. But where? I was so alone. So I get this lonliness It is non existence but yet does exist. It feels. If only I could show you lists of people you have comforted and that your life has mattered to and for. Maybe reminding you is enough but never to scold for needing a reminder.
  12. SassyBetsy

    Thank you Tarina. That hour is very special to me. You are so kind. Thank you Asha.
  13. SassyBetsy

    Thank you. I just venting here. I want to pretend that day never happened. We all know early detection speech. In my prayers I ask for a small favor that would help me cope and that would be for my daughter to come home. Then I realize I always have my son to live for. Oh he is grown but I lost mine so I know. In this moment I know surviving is for the strong.
  14. SassyBetsy

    So beautiful. So true.
  15. 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.