! 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.
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.
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
What is my goal today they ask me as I lay writhing in pain screaming for help,a pill,a shot,relief
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.
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.
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
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.
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.
Going to my bathroom hurts
Walking the halls 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.
8XyM.*I now am battery operated!
I got a chance to speak to the rep from the company ,. He was there helping the doc.
It was not that bad.
The doc said he thot they would have to stop. My bp went to 200. Ya. Hurt a bit.
But I did it!
So I had to reposition 3 times. I did push ups! Not easy on a op bed thing. But they finally got the right angle.
The curve in my back was in his way.
Then too flat.
Ok. Took experimenting. One more time they said. But my anxiety and pain elevated. I was exhausted. The total time was 2 hours on the table. They assure me now they have a map to work from and the permanent procedure will be easier.
So then arthritis in my back made it hard to thread. Arthritis? Stenosis? Bone spur.
My doc said everyone has arthritis so nothing to be concerned about.
He did say to me "You really powered through there at the end and I really appreciated that!"
Well after all that you bet I wanted success!!!
But nice someone recognized the sacrifice,the effort,the courage.
I felt a surge of pride,childlike,those words were needed. Bless my doc for the recognition and not taking all the credit. But he is heroic,he never gave up,he tried even though he thought he went overtime.
And they kept me going with the IV courage juice.
So I have just 1 lead in the epidural spaces threaded in the ladder of the spine. 8 electrodes are on the lead, impacting different nerve bundle stuffs of lower back, lower right leg and foot.
The second one is backup and not needed really.
Right away I felt my foot tingle with needles and pins. So I was taught to use the remote and tune signal down. Success!!! I am a responder!!! They said it went perfect!!!
Praise and Thanks!!
The transport driver arrived and we rolled out only to find a van without access to the seats from ramp. I could not step up. I had to go back inside,call for another,wait. 2 hours they guessed. So I was put back in reclining chair, hooked to decices,BP cuff,O2 finger thing, and quite exhausted & happy, I drifted off a pain pill that was sure to help.
Then I WAS AWAKE. Two nurses were saying Ok Shes back, numbers improving, call the doctors from a close by department,call my neurologist.
Wait.wait.wait. wait.wait. It All went well.send me home!
Two doctors asking me about did you fall asleep? Stoopid Q. I said I already know I have apnea but they want study before they send me around on oxygen. The doc asked nurses how did they notice my level drop.
One nurse behind desk was grinning and said "Her Snoring. How could you miss it?"
That is all it took for me to dissolve.
I accused her Is this funny? Sure she thinks so,she is laughing about it. Hilarious! Thanks? Is this about saving me? And I swear the nurse covered her mouth and face with both hands and they all got a huge chuckle saying no its what we look for......
So there was that annoying sensitivity of mine...but cmon, saying THAT was unprofessional and cruel when it was obviously going to embarrass me.
And I had already repeatedly told those 3 nurses that I had trouble with things moving fast ,multi tasking...like them buzzing around me caused nervous chaos vibrating around. Another kind nurse said comforting things,buzzed too but not annoying...softer buzzing yet still hurrying me. Every move hurt me. Breathing hurt. I had told that to my doc. She put it down to my weirdness.
Then they explained how risky living with apnea could be. Hearing someone say in your ear, You could pass away,or have another stroke.......tears broke,my soul broke, why had I endured so much to just stop breathing. That funny sound was me choking gasping in a final breath obstructed. What is there to giggle over?
Each doc made a speech...and both curiously reached out touch my hand. Interesting gesture that failed to comfort. Why? I just said that it was terrifying to have all the fuss...in the event something went wrong I did not dream of This Way.....
And I felt guilty they called my doc to come back.....
There he was as I emerged from the Loo...saying just go to rule things out,get what you need....
I could not hear or listen any more.
For once I understand the worldview of the autistic....
I was overwhelmed...like the kid at an unwanted birthday party. I am THE brat. The obstinate one. Unknowable. Unlikeable.
Yet I suspected the ER would send me back to the nursing home for my doc there to treat my sleep apnea.
So I said Of course I agree to go to the ER BUT I said I already have appointment with sleep study.....ok my doc arrived and the medics were there.....
So in the interest of urgency and decency....I climbed on another tiny bed.
And then the truly OUTRAGEOUSLY HILLARIOUS moments of the entire saga of the day unfolded.....as they loaded me into the ambulance, the medic says "We are only driving over to the next building. The outpatient pavilion is actually at the ER. They could have pushed you in a wheelchair there.
My Insurance WILL be thrilled!
The triage nurse said I was not going strait to a bed......as if the ambulance fiasco was discovered....she put me in the waiting room....said the wait was estimated at 3 hours. I wore a mask and lamented at every coughing contagiousness surrounding me. And then they gave me that famous turkey sandwich,banana,graham crackers, and the npo fast ended. That was all I needed to feel normal again. And I dozed off in the waiting room where no one was watching. And if no one had noticed,I had a thing shoved up my spine, threaded,pounded.....the numbness wore off. I begged for pillows to sit on,lean against.
Somewhere in there they went in same arm same place as the earlier IV but unsuccessful at getting blood. A second try was a fool wanting to use that same arm, I was not drinking water, so I heard myself screaming rather than arguing. He left and I felt they were disgusted. No comfort.
I mean the whole day was tortured. Every hour.
I scream and no one says sorry. They want an apology from me for not providing them blood.
So then they wanted me to sit in the bed reclining on my back. I sat in the chair padded all around sleep overtaking nodding flopping over and then begging for my pain medications.....as expected to need them....in the beginning.....and the doc sent me away saying,well you have had it for a while,so just go see your primary doc, you know it is sleep apnea.
By midnight this Cinderella was removing her shoes and sitting in the chair,then sleeping in the bed. Without oxygen. Even though I gave the papers, told the tale.
We will call the doc. That is a broken response,and today Between napping,totally day passed unnoticed, but tonight I was adamant. I finally said then return me to the hospital, and then oxygen tank came in for me to use while sleeping.
The medic said he had sleep apnea.
He was looking fit.
That encouraged me to resist despairing I am on the oxygen.
I wonder if lack of O2 is making me the irritable person I am. Or maybe 4 years of continuous pain. Or maybe sick of people
Who are just annoying.
Oh the old roomie who said I made it impossible for her to remain well she sent well wishes. I ignored it.
I go in the morning to try the thing.
I am scared.
I must shower tonite. Now this is a problem as usual.
I have new roommate. I have not seen her yet.
My admirer brought me a veggie drink that is horrid. Thought counts. He said old witch former roomie told him I had surgery tomorrow. I said No I did not. It is a procedure
I will be awake.
I will endure pain.
I will feel the nerve bundle awake as tūhey thread wire leads into my spine with a local shot only while everyone is there.
I said her name should never be rmentioned again. I told him she was jealous. I said she was Awful to me. She said Hurtful things to me. I said I was glad she was gone and I will never see her.
I said to him. Do you even understand me?
I know there was an audience. No one offered to translate.
I heard my voice hoarse from talking all night to my friend. I was sleeping. He woke me. He said were you sleeping???
I just blurted. Emotion was there. On the verge of tears.
I was screaming Inside. I am WOUNDED.
If I had thought first.
Here it is phoney cheerfulness.
He not speak my language.
He said he not play bingo with me for candies. He gets candies at the store. He says he plays to see me. He said Only You I play Bingo with.
I feel childish. Silly.
There is misunderstanding here.
Yes I know I say.Thank you.
I say again that I do not like our mutual acquaintance. She is a terrible person to me.
I say Yes thank you for the gift. Thank you for coming. I tell him how to get out of the room.
He says I only want good things for your life.
I feel now like I should have pretended. Shut up.
Then I hear him call for housekeeper who brought him up. I hear talking...then in English I hear Yes I know you did not do anything.
I listen to that and think I cannot look at him and not recall how she mimicked his calling my name and said blahblyblah.
I needed him to know it all but the words were lost uselessly not there.
He was worried about surgery for me. I was angry she mentioned that to him. She stole something. Fake concern.
And no he is so innocent. Just came to visit us.
But 2 women cannot share.
I knew she was angry when she heard him call me that day. She resented that he returned calling my name not hers.
But I feel violated as people come in the room saying you have your room back. WT?
And then the nurse is there that I despise. She makes trouble for me.
I shoo her off like a fly.
Now today I am selfish. I already gave it all. I was nice.I shared food.nail polish. My life stories.
I feel that it may be true that no one likes me. I am odd here.out of place. Pain makes me need.Ask.Demand.
They only see that.
Not tears.not alone. Not ME.
I wanted him to see it.
No one ever does.
They walk away just always saying it is not their fault or problem.
I always show it to them. Stoopid.
I told the nurse I reported her so stay away from me. I say Report that to your supervisor.
Tonite my cna says she is too busy to get me into shower. No one told her early.
I was sleeping.
I said I informed them.reminded them. I need a packed up breakfast too. And a mug with tea and fixings. I will eat at 6am.
Then NPO until dinner prob. Just water. When it is ok. I will hurt. It does for spinals.
Will this be so?
Well I want to just survive. I do not want to lash out. I thot I gave from the heart. I was shot at by all sides. I speak up.
I may be snotty. But I am good. Better than some who speak behind the back saying oh they are trash then
2 nurses came to speak support to me about that mean nurse. They dislike her. They dislike what happened to me left in shower without pain meds. There is decency out there.
God sees me.
Please keep watching.
I am speaking up.
A supervisor that used to care for me still does and I gave him a run for the money headache when I first arrived here in agony.
He went to Paris and brought back Miraculous Mary medallions in a laminated wallet card with a prayer on it. He saw my rosary and we chatted about Catholicism and he promised me one. Last week he appeared with it. I am so grateful for this gesture and I believe in the strength he has loaned to me.
I also appreciate that some know me here understand me and this pain I live with.
I have many who know me well here and yet they are employees and I am just a room number. But some of them well they give you a gift of love.
And then days later my new roomie that I welcomed tried to make friends with staying up on a thunderstormy night sharing stories loaned my nail polish and then she woke up saying she was warned not to stay in the room with me when she had the chance that no one here liked me and she was tired of hearing me say I also needed help from the cna. Well there is one call light and that we share...I said I did not mind waiting.she can go first. Well she had simply collected info for ammo. She said everyone was sick of hearing me.
It was cruel. When I tried to tell the nurse that I had no problem with her and did not provoke her she mocked me saing oh the little girl is gonna cry.
I firmly stated I am not crying.
Oh then it was considered argument. They told us to stop.
So I have ignored her. No more chatting.
They still give us 1 cna to share. When I need something I walk to the door.
When the cna comes in she immediately says I pressed the light. Help me.
So what if I also want a coffee too.or pain pill.
Did I mention that a blind man here is my friend. He asked me to be his girlfriend. I said no. This was years ago when I met him. But I visit and accompany him to bingo. He invited me to his birthday. And so we are good friends. He gives roses and I get him stuffed animals. But there is no physical affection at all.None. I am positive it is forbidden and I do not even want to go there. He is 16 years my senior and his english is poor and my Spanish is worse so we are an unlikely pair but I take him to activities.
So....he comes to the room. Calling my name. Unaware she is there! He is surprised! She says hello friend of 13 years. He is friendly back. He asks where I am and I chime in. He visits and I go to
On Nov 9th I will go in for the Electrode trial.
I am tired of pain.
Risky but I will bet all on table now. I live in agony in a world that sees only weakness in it not the strength it has taken to live since 2014 in pain.
And I need pain pills on time.
So the home has policy that pills given in room omly. I got stuck inthe showers and no pain pill given. Policy first.
I need freedom.
I am with a roommate like my twin.
We watch movies together , talk during a thunder storm the other night, and talk about how I got diagnosed with stroke pain.
I see her problems that are similar to mine,similar to CPS. But she calls it neuropathy. She is not diabetic. I asked how did you get neuropathy and she said after her stroke, but she never heard of stroke pain.
This is our book. I read it to both my kids,chanted those lines as long as I remember,meant them with every fiber and will always.
I recall when the kids became the adults caretaking their mother. It seems impossible the anger bitterness hurt that festered to a head.
Once my daughter's pediatrician when she was a teen gave her acne med saying our closeness was evident so she trusted My daughter would confide problems that arose.
Well we had typical stuff. My son pulled away to grown into a man. I respected his decisions. I am proud of him. He hid when his marriage failed but I cried for him.
Honestly we were so close as a family.
Then then then
None of that matters. Forgiveness matters. I wish the kids were close again but he will not talk to his sister so she blames me and no one talks now,years lost. My son said well you can watch grandson grow from afar, I can send you a picture I found online.
I texted the truth to my son. My jealous daughter said I took away her brother so she withheld the baby so I would feel like she did. She was angry that son and I went on roadtrip, it was xmas,she just gave birth,could not go,cmon......
Now we are torn apart
Like all those jealous of our closeness before...let them rejoice, we are strangers now.
I am sad I not hear from my son
He not text and say he understands the misunderstanding on my text or explain his emotional outburst I was not expecting. I hurt and miss him dreadfully.
Is he so mad he will cut off paying for my cell phone which not only gives me netflix but also enables me to schedule my medical appointments and transportation. Our phone jacks in room do not work and and I would need to use phone at nurses station. I appreciate he says to me that it is his turn. How sweet. But my children do not owe me. They gave me a gift of love.
My days are like the poem thing tomorrow and tomorrpow and tomorrow and tomorrow.....they blend in, some goodness is my hobby. I just got new books,pencils,Hooray. I have care. I have had pain everyday for 4 years. 1 year was at home, 3.5 here. I have survived and I recall lots of help I gave after my stroke as well as what I took from those who loved me. Yes I feel alone and I would never trade places, would never wish this on my worst nor best friend,I had a beautiful life I was blessed, but yes young I lost my life freedom and I call home this snf which will soon have new administration.
I am happy today. I missed support group for stroke,tbi,bcause it hurts to walk. I did not want to shower, get ready. Pain is exhausting. I stayed in bed this morning.
I was visited by Health Department regsrding a complaint I made againt a nurse for being an abusive bully insulting me and interfering with me getting to urgent care...where they called an ambulance to escort me to the ER and then I was admitted to the hospital.....so now that nurse still cares for me but cannot contact me so someone else brings my meds....... This was a complaint I made last year....so the HD said I got the name wrong...oops well lets recall who told me a wrong name around here.....
So the HD said it cannot be proven. I said I know. HD said well still complain because then if many complain......
OH I just zoned to my happy you cannot follow me here place.
........no one can prove what another does........
Then I admitted I took a picture when the 2 nurses were standing hands on hips in front of me....cannot prove...but to my memory issues it reminds me it was real not a dream...and I have hospital discharge sheet.
But who can prove another's bad behavior....
Oh interviewing others?
Some code of silence.
So HD asked if I was afraid. I said well this nurse takes care of me but not in my room. She parks her cart outside my door because that is where plug is.......I just do not like the nurses who are on some power trip......that are lvn anyway. But I deal..... it is history
My real problem
Is that I got a text from my son who says for the last 4 years I complain I am alone and ........ok I do not recall exactly but the gist is I am wrong,selfish...and my inner voice chimed in...undeserving, ungrateful....you get the train here.
I was stunned. His opinion of me is priceless. I want his love and respect, yes still. How dare he address his mother this way. And I thought all was well.
Ok he never visits and it has been months since he took me on outing...which was a 2 hr limit store excursion. Yes he has busy life. I want him to use his off time for his social life, not mine, of course.
But I do expect him to be there.for fun times visit,talk,eat. I am grateful for time he makes for me.
Where did this come from?
I think it comes from his friend and that mom who hate caring for grandma.
So I am that now?
Someone warehoused to die?
And I have the nerve to want to be taken into live,society.
Well, lets see..I have never been invited out with any of his friends for some occasion, just like in real life,ones mom is not included. So how do I interfere?I do not.
I do not expect much. I text. But most of the time I am misunderstood....that I have said something bad against him or hurtful. But he never calls. He prefers text. Great. But somehow I say one thing that becomes a disaster.
He loves me. I hurt him. This situation. He helped, but he young, not expected to be able to do more.
But then I read that and think wait, he is 29 now and looking back, I had 2 kids,took care of my mom......
Maybe root is something else.
Families have bitter jealousys I do not have time for.
NEWSFLASH here, I have CPS. For the last 4 years. While I have been whining, needing reassurance I am not alone when I really actually am alone, I have had daily Pain,hourly Pain and constant unrelentless pain that actually honestly and in 4 dimensions of reality hurts.
I have endured losses. I do not need that laundry list again.
So if I am a pain in the ass, excuse me but I am not some sweet granny that grew old into an inconvenience and wants a call.
No, am I needy on my only son?
Well I am in a SNF for life so how much more can I disappear?
Well MY son said to put my phone away until I take a pain pill.
To me that translation is Hurry up and die already you old bore.
Oh and he is upset, still upset I may add, from a statement I made when I got home from hospital,had no filter or emotional control, which no one was expecting and I said something like I wish I had not had them.
Now let me tell you about my struggle with infertility,miscarriages,and 2 high risk, one even told to abort but I did Not.
SO everyone knew my children were wanted and my ex lost parental rights, so I devoted my life to both....and that could fill a book...
....yes one sentence kills a relationship
I have apologized, and we traveled around we spent time....but now I see oh sure he went along,but nothing was forgiven or understood. Did he read ?
I feel heartsick.
I feel all that but then I feel I survive for myself.
No not really
It is always about my kids.
I go on dreaming for it, that happy ending.
I am not going to the support group meeting tomorrow. I hurt. I should go,want to,but my leg burns,hurts to stand,buckles in pain.
But good news.
There is always one piece somewhere. My electrode trial was approved so I will schedule that. I am ready.
And I have new coloring books from my fav author. Plus new set of good pencils. MY HAPPY BIRTHDAY! I finally got what I never got after I ordered this with activies director. She gave substitutes. Ok nice.But...
How did you ask?
Well I did a survey and earned $$!
I am doin another next week for Amazon gift card.
In the meantime I will wait for pain thing to be done.
And being selfish feels good, i finally spent money on myself.
I play cards with a 96 yr old WWII vet who exercised women on base. She won a silver medal in diving at olympics. The local papers toot her praise. She is athlete and scholar with phD. She now is hard of hearing and losing sight but she is sharp. She plays cards always. Before meals....she plays Solitaire or plays Rummy with others.
She counts cards and knows when one is missing at end od play. She could catch a cheater.
She taught me to play double solitaire.
When we see eachother we both smile. And go play. For hours. Until mealtime.
I talk about her often.
She is alone.Her husband passed. No children. But friends come visiting. Bring fruit or desserts.
Decks of cards go missing. For years i am here. Samne thing..Where is her cards.
She comes to my room wanting new cards. My purple set is worn out old but goood. I WONDER. And I ask activities to give her cards. Sometimes yes others they say no cannot keep giving herr cards. I get it.
So my friend and son give me cards for her. I even gave her a card box. Gone.
Then a drawstring bag with 2 new packs. Her name everywhere. GONE NOW. in a month.
You should see her face. A lost soul. So sad. Misery. And she comes to my room. I give her new cards. One or 2 packs. Ok some get worn out. She tells me. I get it.
But the lost ones. We never see others using cards. No one else here is.
But i say ok I feed the thieves and then she happy she gets to play.
My son bought another box of cards again at Costco. 12 packs. Ok one year. New cards every month.
I showed her a photo and said do not worry. I have cards for us. Her happy smile said it all. Then she pointed at her opponet. Back to the game.
She tells me when the deck was missing 2 of hearts. I said save the pack for scraps. Here is new box of cards. I understand. ALL cards count.
Who is stealing cards here. Ok she may toss an old pack. But not all new things and cards. No one cares or knows otr sees evidence
Ok seriously the police went to her room. Her friend reported that her clothes and stuff went missing. She always wears a watch that winds. They replaced it a few times. Frustrated at theft here and lack
I lock my stuff. Carry tot bags. Laugh but I not lose much. Some yes. But all replaceable
My son promises you will always have cards to play with.
This time i will keep receipt and write it on a possessions intake. I will give them away if needed but if all gone then someone will replace it.
Ok social worker say if you give or loan to her then no not replace the box of cards. I furious. Injustice. But aI give her a new box. My son says cards are cheap.he will buy more.
So a couple of times I play each week as I feel good.
My son bought a new box of 12.he sent a text photo.I showed it around.
I never see otherds with cards
Buy my son is a saint. When i see him he will give to me. I have 1 pack left of last box. Red and blue are for her. I assure her. Never worry. You will not suffer nor be without. I pray for the thieves.
Even police reports do not protect us.
Ok my cell phone is safe but not our cards.
But she is happy playing cards.
I get anggry.
So I help.
111I told my driving company do not send me a lift because I have vertigo. I guess when I topple off when I get dizzy they will take me seriously.
I fall asleep. Whenever. In public. While eating. So after passing out in my bathroom they need to watch over me.
They are saying it is the drugs making me sleepy. Plus I need more rest. SO I climb in bed and nap.
But then I am lazy right? Cmon.
I need my pain med on time.
Yes I am on SO much.
I go a bit batty calling out in pain.
They need to wake me. It hurts.
So wake me so it not hurt later. I need that.
It not make sense.
They not take it seriously.
Like ok just behave. Be nice. Be good.
I cry. I hurt.
Over and over. Same thing.
PAM'S PAIN PRECEPTS
1. Never touch my leg. It burns next to the eternal yule log.
I have been branded by the touch of others. But with permission all is well.
2. I feel stabbed in my leg, calf or foot. I walk slow because it seems like butcher knife follows me stabbing me in mý calf.
3. Wake me for pain pills or prepare for me to wail for for hours until the next dose.
4. Sometimes I just need to color all night. My symptoms hurt.
5. Sometimes the covers are too heavy and I call out for someone to remove them. My leg burns or electrical zaps consumes it.
6. I will want to get out of my pants as soon as I can. I love clothes but now I only harem pants or super soft material.
7. I will do PT according to what my body can tolerate tomorrow not today. My pain does not hurt much now but later I will pay.
8. Allow me to sleep until the pain subsides. Just save my food.
9. I need my pills on time or early if I previously too an earlier dose.
10. I am probably addicted to these pain pills but I have constantly been in pain since my stroke. This is chronic pain but complex regional pain syndrome is more than intermittent pain.
It is CONSTANT.
So I want to make friends here again. I find people to play cards with to there are many personalities, many stages of dementia, mental illness. On the day a psychologist arrives, they wheel them in. I think to myself, this puts all ill folks together but a cna told me that different areas get the crazy ones because it would be too hard to care for 12 of them,so they spread it out. ok so that is why.
But I went out of my room, shared my coloring stuff, cards,chinese food.And these folks were a toxic trio times three. One man buys pizzas for staff and select friends. pizza left me with upset stomach watching them argue, fuss, and leave one man out, whom I befriended...immediately that left me out.
I am glad I showed her kindness. I tried to be nice to all. Watching this man stir the pot left me ill. Then the women.....pitting one against the other,jealousies, petty stuff. Like high school. childishness. Are we not adults with a shared painful history.
I said I would go out and try again. After another day in common room under florescent lights,loud big screen, and over the top drama....woman in tears over some argument......left...
I am back in my room. happy to be alone. I went out there but I found it exhausting rather than the fun days I played bingo and enjoyed it.
Now I got drawn in. hurt. yet detached enough to walk away knowing that these are not people I will continue to visit or go out in common room. I would rather color or watch movies.
I told one lady, I do not even know the other lady so her snippy stuff is before I got here. The lady said does not matter,she is that way to all. I said of course.
And I asked why she continued to hang out with people who frankly act like they hate her....she answered she was stilloo an inherent right.
What kind of chaotic circle of hell was I visiting??
I took my toys and went home. After asking her if she needed any of the colored pencils she was borrowing. She said she had finished. We went our separate ways to bed.
Later that night I was asleep in the bathroom.....no one checked on me.
So the night shift cna was a girl who has taken care of me before. She took good care of me and told me gossip that these new staff had not kept the patients cleaned up. I said well this man bought pizza for them and his select crowd. she said they failed to change patients so next shift worked harder.
My deal is I fall asleep in the chair. I not ready to sleep at midnight.
And no staff looks for me for pain meds...just
for glucose chek@
I spent 5 days in hospital for cellulitis in my good left leg brought on by lymphedema and other swelling stuff. They do not have oxymorphone in hospital so I took oxycontin. It did not work as well plus they did not wake me up around the clock for my meds even though the doc told the nurses. I suffered. But I got treatment. Then released to thehome. Only to find they discontinued all meds after 3 day absence. So think this would be easy to get its all back again? They did not order my meds and they ran out. And no one could fix the code the pharmacy needed except my doctor that was MIA.
Then all fixed by a traveling nurse who took charge.
So I have to heal. I hurt.
I have fluid now congestive heart failure. I got through it. Healing
Pain management clinic is only for clinic time now.wow.
Last time the fellows were so nice but hey things change.
I just ask for help.
and I try to get rest.
I felt alone but then son is busy and ill. I was just me. I feel ill still but I enjoy painfree times. coloring.
My son gets me cards regularly to share with another lady who plays solitaire 27/7. She is 93 And hard of hearing. No words needed. When we get together to play we go for 2 full hours until the next meal. She is a serious player. I get distracted chatting with others sometimes. And others come begging to be dealt in a hand of Rumy. That is what they play with her when I am not around....and I have not been in a while....And my son had my tote bag with cards for safe keeping the last couple of weeks while I did procedures.....So TODAY we played cards.
There are some strange people here that are pure toxic....3 that are at eachother....like kids.....I never know if they enemies or friends.......and their common bonding is a woman with dementia that they parent..protect...common thing unites a band like that....
and today they were going on about how they did not have any cards to play with...because me and the card shark were doubling down on double solitaire.
Oh no cards around here or games of any kind....
So we played on
she taught me
and I havə a passion for it
I love this game
I get it done thank heavens. I pray all goes well with sedation and spinal. I trust. I trust it will go like before. I hope there is not some student there that freaks out when I yell stop. It just comes out....I yelled get this done and it seems it took that guy forever but he was told by doc to continue numerous times.
It is painful procedure. I take sedation in IV, they put airhose with tiny things in nostrils. All is well. I climb on table which is scary for me. I feel like I will fall and I go slow. Tomorrow I am going in the chair.
The promise of relief gives me courage.
I will see son this weekend.But just to bring my stuff. He is always busy. Of course.
When alone I cry for my daughter and my grandchild I have been denied knowing because my daughter thinks I failed her,failed to love her. I ask son. he was there too. he sees another story. Anyway I wonder how much hate does she have to stay away. But maybe she cannot phone me my number is different now I am in new area. But wait she knows where I am could google call me here. wow. she never misses me. hard to take. I feel shame humiliation. being a good mom is something i was proud of worked at.
guess she is busy being mom to sick baby.
I try live in moment.
but I miss who she is. our closeness before i had the stroke.
some days i think why did they bring me back when i stopped breathing then feel ashamed bcuz my son has loved me well and I love him.
I cannot believe she will never be my daughter again...then I am furious for putting me through this. I never chose stroke.
I never chose stroke. my life was not made better by any law suit or thing. I never see now as good as then ever. U suffer. I am not just inconvenienced. My family was torn apart over stuff.
now years later i cannot even recall it. seriously. i just miss what good times i do recall. when i was proud grateful. but wgat was more real.
I just want her.
I opened the gift bag for grandson. she said I gave too many stuffed animals. funny. my mom said I bought too many for her.
there is pattern here. and not my compulsive bunny buying. not much.
so this tiny lilac grey with grey scarf will not be regifted. I keep it in my bag. i sleep with it.
not grown up enough?
I color all day.
lol. small funs. living being. that is all. ok.
I have a gratitude list.
I am glad of things. small pleasures are big ones. My body seriously is damaged.
my mind follow it.
but still not enough help. temp help. no hope for something more.
ok, so the pain hits at 5pm on time like a train. spasms too. so they give me the world's tiniest pill with the world's largest pill. That is my oxycodone paired with my glucophage. simply because it is before dinner and the nurse already must visit me twice in an hour. twice a day even because an hour after oxycode comes the oxymorphone. Can this be spaced out a bit. Well in between comes lyrica at 2 and 10pm. but the 10pm actually comes at 8 with my bedtime insulin because I am freakkin wirh pain these days because a RFA is the real pain killer or perhaps the spinal drugs. Even they do not know. Is it electricity or it is pickling nerve spaces in drugs. But certain is that pretty pinkish...and the 3 pills are varying lipstick shades of pinky.orangish. kinda orchidytigerly brownish capsule. BUTthese in a timed daily regime cocktail only gives me a faint edge off screaming about the levels of pain I feel. Which aggrivates people who come running not because I a fellow hurt and not becauae I may wake napping neighbor BUTthat a state supervisor here for sweeps may hear me and pop out the timer on his cell while appearing to read a text for dinner plans and slowly answer But he really notates the response to scream time.Well I know that they ask people in the business office and physical therapists to answer the call lights only to turn them off. This is tricky they pop in and say may I help you Mother. I was here a while before I realized this was not an insult. They call everyone here Mother or Uncle out of Respect. So then I say have we met? I make small talk and then ask for whatever. And by then sometimes forgot...but they reply: I'll tell your CNA. By now my call light has been off an hour and I am engaged and not more needs with more call lights. So..this year I play a smarter game. I say I WAnt My CNA. That saves lots of time. No happy PR stunts for me.
Ok so a really nasty annoying obnoxious nurse that I just refused to say anything bad about because she would end a sentence with you can have the supervisor take care of you. And I would say naw yall doin jes fine. And so she had to deal with it. She left today and we disagreed about my insulin as usual. But she gave me a bag of pretty hair bands clips and headbands and Bath soap and lotion from the best soapshop ever and included a mini tote bag to keep it in. I cried over the lovingly chosen personalized gifts that she told me she bought because she truly believed I would enjoy it and not because I was upset at her. Well I would not have pegged her as the type to bribe a hug and she caused me trouble again today and did not stop by to say goodbye. I showed it to others and they said oh so nice. Ok so yes it is nice to hear that she truly enjoyed taking care of me. But honestly I cannot say that she was best nurse. I never wrote her caught you caring. I looked forward to her days off. I cringed hearing her voice say my name to wake me if I fell asleep after being given my 6am then 7am pain pills. two things happen.I either get up in pain ask for hot morning drink to watch movies OR I am in bed passed out from the drugs then awakened suddenly out of sorts from a drug dream. like those vivid real ones. me exhausted. Saying no not ready to get up yet. Saying please do not ask me on the hour.let me sleep until my next dose unless you see me up assume I was not ready. No I am not lazy. Sometimes I was up until 5am pain dose because it felt like my leg was being cremated. NO she and I were never kindred spirits. We never shared That Laught That moment. I hardly knew her. See here I meet all sorts and a very few we share and I know it. What the heck is it to be given a gift from someone who says I know you are upset at me right now but I didnt want you to think I bought it because you were upset at me. Wait dont we do exactly that. And maybe wait for a better time. Maybe wait for the last day then.
It felt incongruent to accept this gift. feel happiness.yet annoyance at her.the situation.
In fact I almost did not accept it. My immediate reaction was Oh 0no you did Not. I shook my head. She says I can donate it if you dont want it. I said No I am not going to be like that. I accept it and from what it means and I held out my arms. Her happy face showed me her sincerity. In a second she almost thought her kindness was refused. What kind of prideful fool dismisses such love. AND yet I am so happy she is gone. I will not miss her. I miss others like the one she replaced...and all I can feel is gratitude for the gesture...not really sure what it was. I feel guilt. Like I broke up with someone again who was not relieved like I was....or turned down scout cookies...no creepier. I feel like I uprooted flower beds
I feel like I am happy a nurse is leaving after she gives me really thoughtfully picked out gifts. And that others know her sweetness but I am that.....
well maybe I do not understand her compassion that she had for me or her experience. Do we know our effect upon or how they live right around us sometimes.
I feel sad bad for not liking her not a bit. And I resent her even more. Some unreasonable wasteful part of me wanted to donate it even after I took it. But I like the stuff. Then I tried to give it away. Of course they not allowed to. But I even hate liking this summer lotion. expensive products.
Yes and resent that she goes away to live a life and mine stops here. I think that way. jealous of visitors who come in with new purses. One lady at bingo heard me say I have not shopped for a purse in ages. She said I wonder what that would be like. I said not like before. We shared a wistful sigh. yes her bag looked worn. Truth is I bought one online last year. Not the same. not that mother daughter powerlunch or dinner because we did not have dates. Finding a purse was a high for me. I would use it feeling euphoric for a long long time still proud of it. For some shoes. not me. A bit. Purses marked my life. Tell me a time and I know what purse.
My friend never used one. She feels nothing about such things.
Ok so Mama said never look gift horse in the mouth...but what about the gift giver
I am swelling so badly, my edema is not pitting but walking is painful,like on rocks on the bottom of my foot. I cried. I wear a circaid juxta support stocking thing,but it still swells. The cardiologist changed my diuretics from lasix to bumex and spironolactone. And so then she said nothing can help me because too much diuretics can hurt kidneys. Yes I elevate,but sometimes I sit with legs down because I get up and down. Then I lie down elevating, which puts my leg to sleep,foot tingling. Only 1 foot,the one on painful leg is numb.
So, the doc here at the home put me back on lasix,and I will not be taking what the cardiologist prescribed. Ok, so I was on lasix for a while and wanted something better,and look now I need the lasix again. I will report this to my primary again. See what she says,but the doc here sees the problem and just set aside the doctors order. How can I put my trust in any of this.
I worry not following the advice of a cardiologist. But according to her no cardiac problem now. *Plus I am on a no salt diet right? but I am taking processed ham off the chef salad, ask for a fruit plate when the food served is ham or something salty like sausages.
Sigh. So back to Drawing board.
I went to my cardiologist today because I called last week telling them since she cut my diuretic, I am swelling,so then when doc got message,she had her nurse tell me on Wed to get lab work Thurs and come to clinic on Friday at 8:40 for evaluation. So I luckily could have my blood drawn at the home, but unfortunately they never sent the results to the doctor so during the exam they did...
But the story starts with this:
BUT when I arrived to the office I was so tired and had leg pain so I sat down in waiting area and asked if I was at the correct place because the nurse had given my transportation the wrong address...another story....and the office clerk came over to me saying no they did not find any appointment for me...
SO I told the story of being called and instructed to come in for this 8:40 appointment, so please try and find the nurse or the doctor....
....then the office clerk said, well if you will let me finish, you do have an appointment in August.
...I said did you hear what I said about the nurse calling me telling me to
arrive today at 8:40?? I said wait I will write it down. And I did. I said please take this and help me. She said There is no appointment today.And she told me I could keep the paper I wrote out.
When I am stressed out, I breathe shallow, my chest hurts, I get dizzy, there is a rolling vision and sensation, I find it impossible to choose the right way to get my thoughts across, I feel physically ill. No, this is not a panic attack. This is a stroke attack. All my deficits become more pronounced. This is not a mental state you can avoid,this is another stroke by product.
And once here, now I have the crisis that stressed me PLUS my stroke stuff. And then it is all about coping. So do not think I am weak getting all flustered. I am handling war of the worlds in 3D one handed blindfold. But it hurts, I start to cry and I hate the universe for all of it.
So I felt devastated that she was not hearing that this appt was made 2 days earlier by a nurse there. I mean, can someone go check with someone? Can they believe me. Can they listen to me saying that I did not just decide to come see the doctor. But that leaves the rest even more interesting If I was an insane or utterly confused person because what I did was instinctual. I called over to the front desk and asked if the other two women could help me, and I explained. So one came over who asked me to lower my voice. oh yeah, strokeything for me, I do not even realize how loud I am, or maybe I had to be heard when she was over 6 feet away in a huge echoey room with other front desks for procedures. But she did not stay to talk, she just said she would look into it. I was satisfied to wait until they discovered the doctor requested my presence.
But then she announced Nope No Appointment. Ok, I think we established the computer did not show my appointment. I said,Please ask. But then a familiar nurse came out calling for a patient. I asked her if she had called me,isnt she my cardio's nurse? She said sorry we rotate.I do not know.
I could not even thank her because the second clerk waved the nurse away sayong they were handling it and telling me to not disrupt the office. Excuse me, that nurse took me in last time,processed my vitals,etc...and I can tell you about her family...and I assumed the doctors had particular nurses...but it was my plea, an alert that I was out here needing help. I told the clerks they were being rude and asked why they ignored me, and it was 8:50 and I wanted the doctor to know I was there.
And a third clerk said loudly, when can I get in on this?? The other one said not to, but she lit into me calling me rude for calling the staff rude. ok now, nothing like a crowd to egg you on, and the third clerk was a crowd of 1 who was an instigator.Not to jump in and help talk to someone, but to tell me off, insist I have no appointment.
So frustrated and tearing up, I called the phone number to the cardiologist and explained I was there as instructed by the doctor's nurse,but the clerks said I did not have an appointment, and it was past my appointment and pleaded for help. She said you have reached the call center, but let me try and help you by calling someone. I waited, hearing one of the clerks mumble that I was on the phone right now, and I was expecting one of the clerks to spoil it...
but then a nurse came up talked to the clerk,looked at computer...and I sat demure, honestly desperate to see the doc....and a smiling nurse,an office supervisor came to me telling me a miscommunication had occurred....ya think...and there was no problem with me being seen,in fact someone was coming to get me. I silently absorbed the I told you so moment and said a simple thank you, then called my medical office's "we listen"line and Talked until I was called to walk in the back, then asked
to be allowed to finish that call before they did the vital thing. The woman on the other end is suppose to be compassionate and settle you down, but I said I was making a complaint and I did not want someone to say nice things to me. I wanted to hear that an action was taken,people talked to because I am a disabled person who was treated horribly. And I said all I wanted was someone to come talk to me and believe me, and I wrote that and the clerk never took the paper telling me oh you hang on to that.
The person on complaint line said she will follow up. Do I care?Do I believe they actually do anything. Is that just to make patients believe someone listens.
But most important, I saw my cardiologist, no word mentioned about that stuff, she examined me,reviewed labs, and said heart failure was not reason for my swelling,and no I cannot increase diuretics due to kidney caution. I got good news. But I need a sleep study next.
Maybe they blew me off....
but I live in a home,use transportation....a fine oiled machine is that process of getting me off to a doc appointment.
But what if I had been there on the wrong day..
and confused,worried. And then the clerk sighs,rolls her eyes and says can I finish.
Is that what you say. not me. I would say oh no, lets see,lets ask, and if you need to come back,do you have transportation home now,can I get you some water because I know this can be stessful.
Nah,that is too humane for this TrumpeterTwitter Era of those workers there for a break not a career.