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SassyBetsy

Stroke Survivor - female
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About SassyBetsy

  • Rank
    Senior Mentor
  • Birthday 10/10/1963

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  • Stroke Network Email
    Yes

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  • Stroke Anniversary (first stroke)
    05-20-2014
  • How did you find us?
    Google Search

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  • First Name
    Pam
  • State
    CA
  • Country
    United States

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  1. SassyBetsy

    THANK YOU Tracy for the understanding. Thank you Sue for sharing. I have lymphedema in both legs,which makes the problem of circul!tion. I hwiave pumps to put on trwice a day. It pumps up and down my leg. I feel goodafterward. On the foot that has the black sore on the heel I have to wear this boot thing it's all puffy and I can't walk on it so I have to take it off if I have to get up and go to the bathroom it's a big pain but it does make my foot feel better to not have any pressure on that support and I'm going to have to go to the wound clinic about that and see what the next step will be. But as far as my lymphedema goes I have to start all over and do these wraps compression wraps with bandages to try and get the water off my legs again and then I can get fitted for these velcro circaid juxta Lite velcro wraps and they'll be in a small size to keep my legs small and not puffed up like they are now so they don't want me to go until I get rap three days in a row. It's really a pain for me to get picked up and taken over there three days in a row I did it before and I just can't believe that because they didn't keep me rap at the nursing home and I didn't get those things to where and then my cellulitis just returned and I've put so much effort into trying to stay well but they're not helping me. So they say just lay in bed with your legs up in the air but what I need is the compression and I need these things to be ordered by the doctor. So anyway today I got to try out the pump and I really enjoyed it I just sat there for an hour and colored and the time went by and it made my legs feel great. So I'm hoping that in the future this is going to help prevent getting my leg infections. I really have to do that so that I can get overdo the clinic hanging get the spinal. I don't know what's going to happen about the rest of the things that I need I'm just taking one step at a time. I'm sorry that you're going through all these things to but it does help to know I'm not alone. It is really horrible to be in the hospital so lonely experience but I didn't appreciate that the food was really good. And it's a sorry transition now but I really need to stop eating such rich foods. LOL well I'm sorry that oh that happened to the melanoma leg because that leg deserves a rest I hope that everything is under control and that you won't have to do much to it.
  2. When emotional,I cannot think or communicate well. I stammer,beg to lets talk later, I cannot be put on the spot to perform. I cannot be there for others,selfishness, no I just cannot get past stage fright being expected to be thinking on my feet. High expectations will only stress me more. You love her and want to not fail her, and you are not a lawyer trained to think fast answer amazingly. After all, our emotional deficets are battered and bruised. I suggest telling anyone who asks to just write down their concerns rants bitches which triggers you less and allows you a chance to read,process with time. Time is needed. Time to slowly take it in,and figure out what to say. To illustrate this ask someone to watch some video called Fat City,How Hard Can This Be. It is about learning disabilities but full of communocation stuff like expecting fast responses. ALL WE NEED IS TIME TO THINK. Then you can tap into that loving supportive side we know you are on here all the time. Well that is my opinion anyway. Good luck, this helped me so I hope it is worth a look.
  3. SassyBetsy

    Back home

    ! I can't believe this April already! And I can't believe how long it's been since I've done a Blog. So much has happened all of your prayers have helped the miracle that has happened in my life. I was on antibiotics IV plus pills well the ivy was 10 days the pills was like a month and still I had fluid weeping out of my legs. Now I have a lymphedema condition they say and they said just elevate your legs and keep it on this diaper here so that all this fluid doesn't keep getting all over the bed and just stay here in the bed. Well that didn't work well for me because I'm a Nancy person and I like to pop up and look around and sit up straight and I just didn't believe that being in the bed for the rest of my life was going to help things. So then they sent me out to the hospital to have my legs looked at they said well you need to go to the wound clinic at the medical center and get a dressing on this. So I went back to my nursing home and they said well you don't have to go there we can get the wound doctor to come see you and the treatment nurse will come and do her thing. And the doctor is going to come see you. Well between those three fools I managed to have these cauliflower looking gross up and down my calves that were infected painful and all I could do is just sit in the chair I couldn't really get out and do anything. So I was very lonely. And it's nice to know that my good friend that I always go visit he said you used to come visit me all the time what happened don't you feel good. Well he's blind so he can't see that my legs are all wrapped up like a mummy. Because when I finally got my wits about me and got scared enough I decided I'm in too much pain not to go do this so I went to the wound clinic. The doctor there just said I can fix this but I can't prevent it from happening again unless you will elevate your legs and keep these bandages on. So I did and it wasn't easy because you see one of my legs is that crazy stroke-like with CPS and to have it bound up with tight elastic binding was more than I thought I would be able to bear and yet I did it and they did use a really soft cotton ecloud kind of bandaged. Was just fabulous and I would not have been able to do it without it but the people here said that I made them out to be a fool. Well if the shoe fits put it on. So the wound doctor came to see me the day before yesterday and I just laughed him out the door and I said no I don't want to see this doctor and he looks so shocked like you've been kicked in the knees and he said oh you don't want to see me and I said there's no need I'm Healed I'm all healed up and he's like oh oh well if you ever change your mind and I said you're still not listening to me I said I am cured. So anyway that fool went out the door. Now I understand why so many people have their legs amputated around here. I truly am grateful to the wound clinic and my big blister on my foot got healed my leg got healed and I'm in good shape right now in fact I'm wearing circaid juxta lights which are these really cool things instead of support stockings so that's supposed to help me comply with their wishes for me to stay compressed now this swelling seems to be going on and they asked me when did it start and I said and I started taking medication. infected painful and all I could do is just sitting the chair I couldn't really get out and do anything. So I was very lonely. And it's nice to know that my good friend that I always go visit he said you used to come visit me all the time what happened don't you feel good. Well he's blind so he can't see that my legs are all wrapped up like a mummy. Because when I finally got my wits about me and got scared and of I decided I'm into much pain not to go do this so I went to the womb clinic. The doctor there just said I can fix this but I can't prevent it from happening again unless you will elevate your legs and keep these bandages on. So I did and it wasn't easy because you're see what am I like instead crazy stroke leg with CPS and to have it bound up with tight elastic binding was more than I thought I would be. You wrapped it up with really fluffy bandage over a wound dressing and then compression wrap was put over that. I had to leave it on for a week. Showering was difficult and I needed assistance and I needed my legs wrapped up in big trash bags. Not the Glam Squad. But I was so grateful to feel hot water again. So then after that I was able to do what they told me and my wound healed up great on both legs and it's kind of pink red shiny right now and I'm not sure what it's going to look like when this gets finished but I don't care about scars at all I'm just grateful to have nice skin again. And at first it was a really dried up mess but guess what my treatment right now is. Right now I'm putting Selsun Blue on my legs for 10 minutes a day and after that a good coating of Aquaphor. And then this is under my circaid juxta Lite which are instead of support stockings. There is a velcro which means I can make them more comfortable. But since the idea is to keep me wearing something I think it's just more or less the idea that in the event of I can adjust them. So in 2 weeks I will be done with all of this watching me with the blue shampoo and I don't think I'll be using it on my hair because I just watched a YouTube thing about a girl that had the purple shampoo turned her blond hair blue. So I think I'm going to avoid having blue hair although I really think that she looked cute with blue hair. So anyway right now I am really thankful that I am up walking around on two legs however my strength has been is that from me. So I went to lymphedema Clinic and the specialist there said it doesn't appear that I have any vein problem and in her honest opinion it's just a bunch of swelling that got out of hand and because the water had nothing else to do and nowhere else to go it broke free by spilling out of the pores which just made a break in the skin and then by having me just resting my legs on a diaper it was actually pickling bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I needed bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I needed my legs bandage over I will dressing and then compression rap with put over that. I had to leave it on for a week. Showering was difficult and I needed assistant and I needed my legs wrapped up in Big trash bag. Not the glam Squad. I went to the lymphedema Clinic and the special is there said it doesn't appear that I have any vein problems but that I do probably have some circulation Problems and she wants to do a 3-day rapping to see if she can get that fluid to move out of my legs. She said that by letting my legs just sit on the diaper pickling in the juice that was coming out of my legs cause even more sores. Now she advised me to elevate but also to get up do exercising like leg pumps ankle pumps and walk around because she said that the inactivity and laying in bed was causing more swelling. I just wanted to throw my arms around your neck give her the biggest hug and I just felt like I told them so I told them so! I knew nothing good was going to come from my laying around and not get up. So I broke all the rules Which is a good thing or a might be in worse shape than I am. And I needed to see people. What it did to my mental state I can't even begin to describe now I have been on so much pain medicine that I sleep a lot but I swear I've lost a couple months I can't even remember what was I doing where did the months go I was just sick I was just dealing with my legs and look it's already April. But my legs have healed and I cannot begin do you express how grateful I am to the team that help cure me and so when these people here at the home come in and say oh you made us look like a fool I just don't have any patience why aren't they happy that I avoided maybe a bone infection that would lead to something worse. oh so I forgot to say that the week after I first went to the wound clinic the nurses came to me and said I needed to get another 10-day antibiotic through the IV. now I had stayed in bed those 10 days my legs up my arm out I was not going to deal with that again and I said I just had the infection cut out of my leg nobody mentioned anything about backup Antibiotics. Then they said I had this blah blah type of infection. So the next week when I went in because I was going in weekly to get my dressings changed because they frankly didn't trust the home to do it I asked them if I needed to get a 10 day I intravenous antibiotic because the culture showed blah blah. The doctor said so it's looking good it's Halen fine and it's going to be better than expected and it doesn't look like you need to have any more poison capital L capital O capital l. well those heavy-duty antibiotics are really good when they can save your limb but I think you meant that I wasn't a candidate for that anymore. so the world Clinic was very very good for me and the home here finally got me the stuff I needed like the soap in Aquaphor and Are helping me out. though there was one problem of course there always is the girl at the desk came around and was talking about how I should have not been seen because of insurance thing blah blah blah so then I called my insurance and they said oh no you should not have been involved in that that should have been behind the scenes I said okay all right. so then the next week I was there the girl at the reception was rather rude and so I thought okay she's just busy and then something came up and I had a question for one of the nurses so I called and I asked if I could get a message to the nurse and anyway long story short the woman was really short tempered with me now I know that I don't understand things the first time I'm told anyting. but then I got to thinking about it after I hung up and I thought wow this is not doing my soul very good to be feeling like I am right now and I need to tell somebody about this. my medical group has a thing called we listen and I called them and I vented. so then I got a phone call from the office manager at the wound clinic and she apologized said she thought it was just a misunderstanding. well I said I do miss understand plenty but the one thing I know I never misunderstand is politeness or the lack of. so anyway I said that I did not need the lady to call and clarify anything I just wanted somebody to notice what was going on in their office because if I didn't have to return their I would not and that's a shame because the medical team is excellent. so anyway I went back the next time and they tell me that it healed really great but that they weren't discharging me yet because the doctor wanted to make sure that the swelling was it going to happen again and they want me to use this air pump that I'll be wearing twice a day and push the button and it will be compressed let eggs. so after using that for two weeks I'll go back and see them again. But in the meantime I'm waiting for the insurance stuff to go through and for the medical supply to bring it to me and teach me how to use it. I'm grateful for all the new people I've met who have helped me and for those that I've taught me 2 also be gracious but assertive. Then so now here it is springtime and if I feel like I hibernated through winter because of all this it seemed like one day I was running around with my shoes getting a blister because the stim trial worked out really well and then the next I was lying in the bed feet up hooked up to an IV. So much as going on and I feel like I can't even remember it all this medication makes me not remember but one thing that's been really awful is my roommate has been declining and she used to be so Lively but they put her on something for anxiety. she doesn't eat very much anymore she doesn't want to eat and her voice is like a whisper now she just keeps getting weaker and softer my best friend and I talk all the time and she said you've got to stop getting involved with people there at the home because they are so much older than you sicker than you and a lot of them are going to die before you. so one of the main problems right now is that I add to cancel my surgery and so that means that I'm not going to be getting the electrode put in and I'm not even going to be getting the spinal and so not going to be getting the RFA. The nurse wants me to call in and then probably go in to see the doctor. I said I need to get completely well and make sure that this is not going to start up again so I'm not going to be scheduling the surgery but I would like to get the spinal RFA. I feel like I'm a damn down that I have cancelled the surgery that they had brought this team together and he had sought out this great program that could really change my life and that I just am now really super worn out disappointed what went on and I'm just not ready to schedule it I feel like I need a minute and my doctor also agreed that caution about infection I should be taken because I guess foreign bodies make good places for infection to go to. anyway I just need to get off of all of these medications that are making my mind in hibernation but on the other hand after all the pain and the ivies and all that I just feel like I need a break and I just thought to myself surgery surgery do you know what you're doing surgery! so my best friend says to me what's the matter with you you are all ready to do this you were all excited you know that this is the way to go why question now? well I have the answers to that first of all I don't like how I was treated when I was really in pain and I needed them and I'm questioning how well they're going to take care of me here then the next thing is I was thinking about what I went through and do I really want to do surgery am I prepared to go through that recovery and I guess it just all of a sudden when it was a couple days away I got cold feet first I was upset that I wasn't going to get to have the surgery and then the next thing you know I'm upset because I just needed to cancel it and and that was that so they just need to hurry up and reschedule and I've just got to get myself back in the groove so that's why the doctor wants me to come in for another consultation so the day that I went in to get my RFA the nurse does something about oh we're going to see you for the surger! so I said yes then she says do you know how excited Dr so-and-so is to do this surgery and I said well I'm not doing it for him and the nurse says oh I know that and then she looked at me really strange and I realized that I had just blurted it out and it didn't come out sounding very nice not like it did when I was thinking it for the first 2 seconds but there it was and I was wondering why did I say it like that do I feel pressured do I feel like if I don't get this surgery I'm letting them down do I feel like I just need to get it scheduled and just get it done already looking forward to this I need to think about how wonderful it was to be walking around and not have the pain that I have everyday not have to take all this medication and all the positives the decision had been made in fact I would be getting the surgery in April but it's not going to happen now and I just need to concentrate on one thing at a time I get very overwhelmed. I know that this is not a good thing that I've had too much time to think about it and get cold feet it was better when I just went from doing the trial to scheduling the surgery it was fresh in my mind how much it helped and now I've had time to wonder about am I doing the right thing by having the surgery and maybe I don't need the surgery maybe something else I just want to not have it just want to have some way to get out of having surgery and I don't really believe that that's the best thing for me I believe I need to get Brave and get the appointment so and I know that doctor would never I want to be coercing me and that he would want me to do what I decided was the best thing and that I need to fully believe and be on board that it's the answer for me in a realistic way of course but based on the trial there's no reason to believe that it's not going to help a little bit and a little bit will that be worth what I'm going through with all the recovery time and I'm very very scared of that and you know I I guess I am just I know I'm not alone that I have my support group here and my family and my children and hello everything's going to be good but I just really got some cold feet and decided that I needed to take a break and maybe it was just because I was so sick and that I just felt like I needed some rest and maybe this is just what I need to do right now and maybe think about it in the summer I don't know how long I can put this off because I hurt a lot and I don't know if putting it off it's a good thing because I'm not able to really walk around but anyway are you going to try to get my health back in order and then I can think about what I'm going to do I'm probably going to get the surgery I just don't feel like there's and option I just can't see going on living with this daily pain like this it's like something must be done. anyway I just want to focus on celebrating.. I am home now and it is may now and I am still dealing with infections, and just have a black pressure sore on my foot now. It hurts. I EXERCISE by walking around but no p t right now. I never go out for appointments now but i am trying to get back to shape. I ordered new pink shoes. I want to wear shoes again. I a am ready to walk around and be healthy. I color,watch netflix and visit with friends here. My life is sad though. My days are filled with prayer, as i try to be willing to livve as i am given my days but i seek better health and days. I wish my roomie was given a better bed, better food, better time. I am learning to sleep with a sleep apnea kit. I used the nose pillow thing but it shot air up my nose and choked me when i opened my mouth, then the one that went aroundd my nose was too tight. I like the one that lets me open my mouth and talk. Of course. I would not like ever being gagged.
  4. SassyBetsy

    Suffering

    Suffering is something I am good at. I ha ve constant pain, not chronic. I am always in pain. It is my life. I am able to color and watch movies and eat and do thngs that they determine are all signs that I am not having a 10 day. I am in the hospital right now. I had to get myself to urgent care, then they sent me to the ER and then IWAS put upstairs. cellulitis again in my legs, but this time my right heel has a bed sore. not a blister, this is agony, who will get me what I need while I am in the hospital.... well the nurse last nite let me sleep. Islept over 8 hours. I woke like a banshee and with twice the attitude of queen of them. I blamed them for all of it everything and then I got some meds in me and was fine. no one understands me. I must return in a couple of days or lose my bed in the hom I need to sleepn now and the nurse says she will wake me. Good morning I am waiting for an MRI. I have a bed sore on my heel. I thought it was a blister, OMG ! I want to scream. I was going to get an electrode and now this. I never get rest.I want to be happy now, I need to go go home to rest but now this. I want to go home to rest but I Must get an MRI b4 I can go, finish antibiotics and go home to the place I call home now, or be alone homeless. I want to cry, I feel alone. My son did not want to come to hospital to visit. No flowers, but my best friend told me a care package for mothers day awaits me in the the mail,so hey I am loved. One love is enough for me. I polished my nails yesterday, I feel better with red nails. The pain management team member visited,told me I am on too much pain meds so that hurts me more, I need less meds to feel better, I nearly felt crazy, I said yes I want an electrode, but it took years to get this cocktail all day to be figured out. I cried, I mean it makes me feel nuts to cry in front of people, no reason but mad at mean people who confuse me, fail to listen, no compassion, of course I take a lot I fail to understand how can I take less when I hurt so much more than in my dreams..I need cry to feel better then Empty Alone What is my goal today they ask me as I lay writhing in pain screaming for help,a pill,a shot,relief The goal?to Be normal,walk,smile,be happy,be nicer,what goal,on what planet am I on,what time dimension am I from...am I in purgatory.....they ask me seriously..... l wish I knew the goal. Am I for real can anyone tell me in a nice voice that I am going to be ok and return to what I used to call nohrmal? It is a nightmare to be alive in this pain,alone in pain,alone without love yet my son tells me I am loved but he is busy as children grow live a life apart,and I feel regrets for things because NO ONE IS HERE! I know I lived a good life helping others yet here I am alone on an island, stroke took me away in a boat to a place where I cann of even talk right when I am sick,I cannot walk when I am sick,and then they look at me as if I am faking it, but the docs say stroke makes it this way,then it went away. I feel better and it is not easy to explain to people I was ill,stroke deficits returned, and now my shaking is done, I can see better now,and I am a better yet weaker me. I am whole and again myself. I was scared. I called neurologist,he looked over my case and called me saying I not need him, hooray. Then hospital antibiotics, I am o n day 6 now, time to go home or I will lose my bed. Am I this ill... They don't know. Please send me home. Or I will not be allowed to return to my pretty room. .
  5. SassyBetsy

    Finally someone who appreciates you and your condition! Hope looks good on you! I think the trials are on! I am happy for you Scott, and I know the journey to now has been hard,but the future looks life changing.
  6. 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.
  7. 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.
  8. SassyBetsy

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

    I will miss chats with Denny and will see him on the other side.
  10. 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.
  11. 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.
  12. 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
  13. 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!
  14. 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.
  15. 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.
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