My daily AND Quarantine Routine...
7AM (Oh What a Beautiful Morning) toast and peanut butteragain
9AM (Acuna Mattatta..).watch lion king and nap
10AM...order Amazon goodies because as Jerry Herman advises ("We Neeeeeed a Little Christmasmmright now")
Noon ......Call friend (Hello Dolly)
cancel appointment(And I am Telling You I am Not Going) and engage in some therapeutic coloring
2PM...Little Anthony calls then..(And I think I,m Going Out Of My Head..)... then I pray( God Bless America)
5PM I watch the news and realize that Disney was right( It's a Small World After All)
6pm... while eating a peanut butter and jelly sandwich... I watch TV and think that Korn had it right( It's So Unfair)
Later I watch Steven Colber because to me he is ( The Music of the Night)
I was sitting in a movie theater watching a movie enjoying some popcorn with my son and all of a sudden I started feeling like I really needed to get my bra off eyebrow is way too tight then that pain radiates down my left shoulder and arm and even my hand and I thought something's not right here I just couldn't get a full breath even with that darn tight bra off and I did something which I never thought I do in my lifetime I leaned over and I asked my son if he could please unhook my bra because I needed to get it off.
Mom is watching the movie I had to keep covering my eyes because it was like being in an IMAX theater those the side effects were just overwhelming and I was wondering am I having a heart attack or is this my vestibular system making it very difficult for me to enjoy watching a movie. So then after a few minutes I decided to got my son again and tell him that I just couldn't do this movie so I got back into the wheelchair and he rolled me to the bathroom because I always have to go to the bathroom. So while I was in the bathroom I made the decision that I better get this checked out. So as my son rolled me to the car I was saying honey I'm just not feeling good so when he got me fast and in the seat belt and he was behind the wheel I put my hand on his and I said I want you to stay very calm and listen to what I'm saying and not panic I need to go to the hospital because I think I'm having a heart attack.
So I was okay in the car driving there but as soon as they got me out of the car and we're rolling me into the emergency room I was finding it very hard to catch my breath and it was very uncomfortable feeling and the pain that had just been kind of an a was now an intense pain and pressure and I knew I was having a heart attack and all I kept saying is please let me breathe please let me breathe and it kept asking me questions that I just couldn't answer my son was answering them for me so I was okay in the car driving there but as soon as they got me out of the car and we're rolling me into the emergency room I was finding it very hard to catch my breath and I just kept saying please let me breathe please let me breathe and I need oxygen I told the person over and over but she just kept asking questions and I couldn't answer them my mind was just focused on one thing I need to braid my son was answering the questions and I was so impatient and I think I said something that was kind of rude and my son does not like to see me behave that way why does have no filter and he just intervened and said I really think that she needs to have some oxygen and so then they took me right back to the bed and then the doctor came in and was asking some questions it was all moving so fast and people were coming at me hooking me up to things and that was overwhelming they were moving at lightning speed and I couldn't keep up with what they were saying but I was trying and I was really annoyed at everybody you were trying to save my life. He asked me to come over to the gurney from a wheelchair yeah I was super annoyed cuz they didn't have the little step stool and this is kind of sadly hilarious.
So what was kind of weird was that the person kept saying that they were really not allowed to use the stepping stool for people like patience and then she said well really the staff is not even supposed to use those and so I just blurted out then why is it in the building? And of course my son started saying come on come on you can do it up in the bed up in the bed which was code for oh you better stop talking. So then I was able to get up in the bed and then it's all just sort of a whirlwind after that I ended up upstairs and of course and no I'm trying to do what they tell me but also I'm needing to go home so that I can maintain my bed at the nursing home. There's a big long waiting list so I have to go back and claim it as mine and start that clock ticking again. Oh.
I was just getting the hang of being a stroke survivor and now I have to be a heart attack Survivor. But I'm so grateful that nothing happened on Christmas Eve or Christmas Day because my son stayed at my side and I didn't want him to be scarred I said never let this ruin your Christmas because just remember that it's a day to celebrate did I survived and if for some reason I had not made it then know that I was free not now I have another dilemma I need to get some stents so after they did the angioplasty they debated over whether or not I needed to have the bypass or the stent they decided that I'm not healthy enough to recover well from the bypass so they want to just do this dance and said that I'm more likely to you don't know. And I'm grateful because I don't know if I could have been okay with more pain on that level and I was so chicken so it's sort of a good-news-bad-news thing because I kind of need a bypass but all they can do is the skin distant is extremely risky as well but it's a lot less risk and the doctor said that the longevity prediction is the same.
I have to be brave for my loved ones right I'm so scared right now and yet I'm just still so angry that I Christmas was ruined and it doesn't even seem real that all of my problems overwhelmed my body and I could be dying but again I have borrowed time again and I can still spend some more time with my son. But he said to me that we've been spending a lot of time together since Thanksgiving and even before that so that's all it's ever Borton is spending time with their loved ones. And I think of my daughter and remind myself that that's all settled. All I keep thinking is that I having a stroke I felt such peace I didn't have this thing xiety it's like with the heart attack I told him that I felt grief like I was grieving I was so painfully grieving and having such bad anxiety when I had my stroke I was just so peaceful and then I remembered how peaceful I was in the car telling my son to take me to the hospital and it seems like the real Panic came when I couldn't take my breath so maybe that's why.
Time is wish you a very they Happy New Year and may you be blessed to spend time with those you love and thank you for the love and support I know I can always some in here God bless all of you.
I just feel like I have to get this off my chest or I'm going to burst. Right now I really need to get my spinal RFA and I'm having to ask the doctor to up my medication because it has been 4 months. I needed it scheduled at the 3-month Mark I can't go beyond that I've told them before. But they were trying to get me in again for the surgery which I have not been well I've had multiple sinus issues in fact I'm going to see a specialist for a second time and get a CT scan this week. That's something minor but it's caused me to have to take antibiotic I don't know if there's something that can improve my not getting so many sinus infections because I've certainly tried everything except to having my nasal cavity drilled bigger and I'm not really think I'm ready to even discuss this treatment. You know there's some the treatment she just might not want to do in life. So anyway I just don't know that I'm healthy enough to go through a surgery. I need to recover from all of the different things that have popped up this year such as my shortness of breath my excessive swelling they put me down as having congestive heart failure but no COPD thankfully but I have pulmonary hypertension which they say well they could do something to improve the blood flow to the lung if they decide that it becomes necessary to so I can't even think about all these things all I know is that I need to get in for a mammogram and all of the things that I needed to do or wanted to do in December is being overshadowed once again this is a horrible horrible demon pain. I mean I go from somebody who's smiling and playing bingo on the weekend to somebody that laying in bed or sitting in the chair and suffering trying not to move. It's all kinds of pain. There's the stinging the burning the stabbing and about any kind of medieval torture that's what's going on on my leg.
But I did go out on Thanksgiving with my son. I had a wonderful day. We like to play video game. We went to a buffet and we not only had turkey but we enjoyed Lobster as well. My son let me order something and so I was really happy and look forward to getting it for Christmas as he is always very generous and grants my wishes and then some. I only wish that I could do the same for him but I guess I did do a lot of that for a long time. But it was just so good to see him and to experience the love he has for me and to feel the love I have for him and we're not shy about expressing and saying it. But as I write this I'm crying because you see that day that Thanksgiving day that I was so thankful for reconnecting with my daughter something just Dreadful happened. When I call the number I got a recording that said it had been disconnected and was no longer in service. So I called her boyfriend's number and it said that I was blocked. So Panda King I immediately opened up the Google Drive where she had sent me many pictures the saying that it was too many to email that this was a better place to look at the pictures and it was gone it wasn't on Google Drive anymore. I guess I was blocked as a user. I mean she just erased me out of her life again. I've gone over and over and over what I ever said to her and I always said how much I missed and loved how many times I wanted to apologize for anything I did and she kept saying that it wasn't about me I hadn't done anything and she acted like I had nothing to be sorry for and what I asked and why she kept saying that it had to do with her. I kept telling her how proud I was of her and the life that she put together for herself. To tell you the truth I am forgotten how many times I talk to her I could go back and count them though I remember and what we talked about I need one because there wasn't that many. And I always kind of felt that because her boyfriend was around and she was talking to him off and on I just felt like she didn't give me much attention during our conversation. But anyway it seems like she wanted to make sure that I knew about the other grandmas in the family her boyfriend's mother and the baby father's mother that my grandson has stayed with which made me feel like an utter failure. But it also hurt me because I felt like she had never brought him around to meet me and visit I could have met her out in the community somewhere even at one of my Hospital appointment we could have gone out and I just don't understand why she never brought him around me that I was somehow those terrible mother that didn't deserve to have contact with the child. But we also talked about how she went and thought out her absent father that since he left when she was a baby she never knew. And I said well I hope that you don't allow your child around a man who was not legally allowed to raise his own children. And she says oh no oh no. It kind of felt like a betrayal but yet I told her that I understand that she wanted to see it for herself and see if she did she said. But I don't know what to believe about anything she ever said during any of those conversations because on Thanksgiving morning when I went to call her I couldn't reach her I couldn't reach the boyfriend and I've been blocked from the pictures. So my best friend trying to cheer me and give me hope said maybe it had to do with the phone service maybe she didn't pay the bill maybe this maybe that but it all comes down to know I was certainly intentionally blocked I kept telling her how proud I was of her and the life that she put together for herself. to tell you the truth I am forgotten how many times I talked to her I could go back and count them though I remember and what we talked about any John because they wasn't that many. And I always kind of felt that because her boyfriend was around and she was talking to him and I didn't feel like I got the attention during the call. And then she told me how she went and looked up her absentee father but since he had left when she was an infant she never knew. I said well I certainly hope that she wasn't having that child around him because he was not legally allowed to raise his own children. She assured me she wasn't but it did feel like a betrayal but I tried to understand her need to see it for herself. All of that was so unimportant I just was so happy hearing her voice. I always hoped I would hear it again but I didn't know what to hope for. But then I found out she had been close to me a few times when she came to visit friends and I just ask her why didn't she come see me the baby to see me and she just cut me off and said well the priority was for the baby. As if a nursing home or something that was going to be a bad thing on a baby. But I did find out that and it appears to be at a boyfriends house and she met the boyfriend because the mother was there at the hospital when the young man had a lung transplant and so she was offered a place to come live out of the Ronald McDonald House and that was a few years ago and she's been there and then the man tells the part of his family she's not married but I want to she says. But when I was talking to her I caught her in quite a few lies about things she kept saying how she loved the baby's father so much and had to work it out that taking a nice parenting plan Etc. But as I recall she said she did not love the baby's father and that the baby was an accident but she was going to have the baby and she couldn't decide whether she was going to give him up for adoption or not but then of course when he had congenital problems that needed surgeries that was off the table and it was too late for an abortion so there she was with a sick baby and nobody to help her so the baby's father has done a good job of taking care of the baby in fact I think that he has custody of the baby because most of the pictures were taken it seems not by her and she was in hardly any of them anyway the parenting plan of the future will be that he gets the boy when it comes time for school and I said well where is he now and she said with his dad though she hadn't had him at all this year because she's been sick she said and she kept telling me what the doctor was looking for apparently she was having a hard time getting the doctor to do an MRI because of symptoms she was giving him and she just kept saying different things about how she was sick and I said well what you're talkin about is usually fatal it has to be treated is this what you're talking about and it's like she just kept wanting to make me afraid that she was dying and I kept saying well go to the doctor find out exactly what it is because a lot of things mimic things so you've got to go to a specialist and get diagnosed don't just look on the computer and think your doctor has to go looking for this it was the strangest thing. I mean I've never talked to her about my breast cancer scare but believe me I wanted people telling me so it's going to be fine it's nothing I mean I wanted them to flat out lie to my face I wanted that hope. so it was very strange that my daughter kept talking about how she had this life-threatening illness probably and that she would most likely have to get on disability and I said you're only 27 get to a good specialist and I'm sure that you're not going to have to be on disability. well she told me how awful working was on her body and I just got this feeling. She wanted to get disability like her boyfriend who was indeed quite ill but doing okay at this time. well I asked if they were going to get married because I worried that would the mother still allow her to live there if the worst happens and he passed away I mean the mother may be happy that her son is happy but maybe the mother didn't expect him to survive or something. but I didn't say any of that I held my tongue of course those are the ranting fears of a mother at midnight. anyway I just praised her and encouraged her to have hope go check out the doctors and please keep me up to date and she asked me about my health but she didn't really want to listen to me go on about it. she never tried to talk about anything except a few things on her agenda tell me that she's probably dying the way that she looked up the deadbeat share pictures that the boys being taken care of the father because she's too sick to take care of him and all I did was support her and she led me to believe that she was happy talking to me and that she wanted to be informed about things. I guess I didn't talk about the things she wanted to talk about she asked me if my son is still around me and I said well yes and she answered well of course. so they had a falling out which she holds me responsible for but I just waited for her to say something else I didn't want to get into an argument. so she told me that she was going to be cooking on Thanksgiving and then going to her boyfriend's family later in the evening to eat and I said well sounds like you're going to be busy if I don't get a chance to talk to you before tomorrow then I hope you have a happy Thanksgiving she sounded very happy. and then I go to call the number like she knew I would of course I would of course I would contact my family member on Thanksgiving who's my daughter who whom I've been very close to during her teenage years and only after the stroke things were so horrible. But that's probably wishful thinking and if my son's any indication the problems go way back. In fact my adult son as always use the phrase doesn't she remind you of someone. Yes I put up with that peekaboo Behavior from the deadbeat finally figured out that the only reason he returned was that he delighted in looking at the Fallout. he like to be told how much he was missed and how important he was and how much everybody cried and how we felt because he wasn't there at some important holiday. but he was not remorseful for choosing not to be there he would blame it of course on me with some ridiculous story that my adult son has thoroughly quizzed him about all these things and my son has decided that the man is nuts and I'm remorseful. He's very anti-social believe me it's hard to lose take legal custody away unless they must so I had physical and legal and so he looks at it now that the children were taken away from him like he had no hand in it. but the courts had said he could go to supervised division again hoping to somehow reunite the children with their father. But he never did it he uses the excuse that he was out of state and that he just wanted to take his kids out of state. I think the court had a pretty good idea that if those kids left the state I would never see them again. I saved those children I raised those children I love those children nearby children and yet they are still his in a way he does not deserve my son says he likes the way things turned out they turned out the way they were supposed to and he's talked to his father over 10 years he listens but he tells me Mom he's never been interested in getting to know me he just talks about you and I said yes I am going to be the only senior citizen in the nursing home that probably still needs a restraining order. I never was in a support group for single mothers I was a good role model and I was proud of who I was and I worked like crazy and I put them around other family members that loved us and friends that cluded Us and Them. they never wanted for anything well I mean they wanted thing what kid doesn't drive their mother and saying about wanting thin.gs.. it's good that my son he worked for his first car but not my daughter I helped her out.. and yet she's jealous of him.
my friend says don't feel insecure as a mother and I said no what's done is done dealing with stroke problems not parenting problems but I sure didn't need a broken heart right now. first time is always protected me and never passed on anything that we're in his communication with it father. only the beginning I asked and then I said no don't tell me. he said no he would not do that to me and he said don't worry about all his word vomit. well my daughter was not as kind. and so I was dealing with all of those emotions so old and dead and unnecessary. I had a professional career and it was cut down because of a stroke he was old news. Anyway it looks like my daughter enjoys his tricks. so my very best friend says to me will don't judge her you don't know what's going on. And I said look I am judging her but I didn't say anything that was judging her but I'm trying to find out who she is now because I don't recognize her and I came to the conclusion that I was proud of her and the conversations were nice I tried to be supportive when she said that she thought that she had something that might be terminal you know I just I acknowledge that could be real symptoms but maybe not something so Dreadful I was not judging her until I got that phone message and then I was like I've been played for a fool she does not love me she is not miss me and I'm kidding myself and my friend couldn't see that that was killing me. always wanted to be accepted by her mother and all she heard and me was that I was being judgmental I don't know perhaps we all hear what we want to hear and so that's why I'll never understand what went on all I know is that daughter disappeared again cast of focus on but I have one good child who cares about me and that's okay maybe after all this time my daughter will find what sea name I hope so but I can't be worried about it anymore and I guess it's obvious she can manipulate things and people and she's going to land on their feet and of course iiove her I want her to call me now. She punishes me for having a stroke, leaving her to fend for herself alone. She blames her brother for not helping her more. But he did. She quit her job. Anyway my happiness never lasts long.
And I mean the kind of things that are on PowerPoints or you know list those kind of things oh the word finding problems I have! Anyway I've missed everybody and mostly missed the days when this group was my daily meal. But maybe I can try to explain my last year.
* NOV I did the spinal trial and surgery was planned for April for perm electrode
*Then after Christmas I had Cellulitis over amd over for months
*They said I have kidney disease amd heart failure disease due to having high blood pressure and diabetes formally diagnosed at 20 so now I'm 55 so after 35 years most of my organs and stuff have been worn down and or not exactly anything to hand down which is why I decided to donate my body to science rather than to be a formal donor. I figured that science could use a whole body every now and then. So I did the paperwork for that and got that all situated. And then got down to the mean business of surviving because I wasn't ready to donate anything yet.
* so then in the summer the cellulitis stuff finally stopped because I met this wonderful wound care doctor in a bariatric wound care center at a large teaching Medical Hospital and he put me on a compression therapy. I wear something called a circaid juxta lite compression garment. It's just a rap with velcro to keep my legs compressed all day. I wear it under my clothes I'm used to it and it keeps my leg swelling down. I couldn't wear the stockings they would hurt and I would take them off scream bloody murder about it so this works nice I can make an adjustment here and there on it. But then the next thing he did was get me hooked up to a pump which makes my lymphedema system back up into the circulatory system like it's supposed to and all I have to do is zip on these blue boots that look something like an astronaut suit and air is in there and it massages the leg there's nothing more wonderful than my time spent in these. I try to use them as much as I can. All of that has been working very well for me and I have not had a cellulitis since I've been doing this. I also volunteered for a study with the Dermatology Department so they can watch what happens with me.
* I know all of that sitting around just made it awful for my vestibular system that needs me standing up in exercising. So I went back to physical therapy. But you know how that is they only authorized six meetings and then it takes 12 more weeks to get six more meetings. But I plan to stay and physical therapy until I feel that I gained my ground again. That means doing my homework which is some of my exercises and strengthening my legs however every time I get a sinus infection and even though I've had my flu shot pneumonia shot will I still get these awful sinus problems and I'm on a number of allergy treatments.
**I went in and found out that I do not have asthma and I do not have COPD! hooray hooray hooray! But sometimes I get short of breath. They tell me that I have pulmonary hypertension. Like I needed another formal diagnosis after my name. Does the person with the most win? Well I seem to be working towards it! But now I can honestly say that I don't have to be long to that study group which I had volunteered to be in and it turns out I don't have it after all so I still have my Amazon purchases going to that worthy support group to study because my friend has it. She has had asthma all her life and now she has COPD yet she has never smoked. So anyway they just said that I had it just as a way to waive their hand at me to go away and just listed as that but when I went and was tested formally in the booth they found that my lungs just don't breathe in at capacity. No other explanation. And so far no other explanation is coming. So I'm hoping that by exercising a little more that it will help me.
I'm now going around in a wheelchair because they told me to be careful not to get another blister so I've been really careful because the last two pair of shoes have giving me blisters. I will be getting a brand new Walker because the one I have the brakes are not working good and the pouch is ripped I really put it through the ringer but I am really careful now about my feet. When I had to have an MRI 2 find out if the infection in my heel went to the Bone well that was a wake-up call but all was well! Again I escaped the bullet! So this week I'm going to pick up a new pair of shoes they're double depth. Fingers crossed!
** this month I'm going to order new glasses frames for my new prescription. My vision has been affected by the stroke. I have strabismus and nystagmus but it's mild and it's stable. But on any given day it acts up and I would say that it's moderate not severe but certainly not mild. The double vision comes and goes depending on where I'm at and who I am at the time I guess. So so I can color because I use one eye and I get very close to the paper and I can read my phone and I think now I can even use both my eyes together but not very often but over the past five years it's gotten a bit better the colors are better now at first they were all wrong try explaining that one.
* last year my mammogram had two spots on it that were suspicious and they told me this and I burst into tears. I apologized and blamed it on the stroke saying that the slightest thing can just make me lose my dignity please forgive me. The women came around me almost in a huddle almost shielding me and I said oh no this is big news that often is responded to with an emotional outburst and do not feel ashamed. But they told me I needed to come in in a few days so that I could get this looked into as quickly as possible. I was at a Cancer Center that is world renowned and so I knew I was in good hands. And my news at Christmas time was that the one spot had been some sort of shadowy thing nothing to even test and the other spot was tagged and biopsied and was a harmless thing that is Tagged so that it won't be bothered next time. So now it's next time and I think I may be braver I know that when I get the news that something's wrong it will always be a sting because of course why would it not. But I will always have the courage to go in annually.
** so this year I did some things for myself color coloring is my hobby. I just got into it and I just never stopped. Now I have people asking me two color things out of the many books I have with perforated pages. Surprisingly and humbly I tell you that they have been framed pictures we're giving to me saying here's a photo of your picture. It brings tears to my eyes. One lady put a couple of my pictures in a collage with the Beautiful calligraphy Bible verse. Anyway it makes me happy and hopefully it makes them feel loved. What do people like they like my peacocks. And they like my fairies. Now I have a couple of books that I color just for me and those are like in my collection. I was a peacock for Halloween ! And if I do say so myself I took third place ! Not bad for just a feather in my hair and a scarf and a fabulous fan !! But now I've told you my secret ! But I don't have too much time to do this because my real hobby is
Oh you just can't believe that yes my son and I play this game he even bought me a new game system for my birthday this year along with the cutest little plush. I find that distractions is the key to my pain management and for my mental health finding just plain old-fashioned silliness fun is the best medicine for me!
** I do have been trying to get some kind of reclining chair to elevate my feet but so far it's an insurance thing! They still look at me like I am the person that should be opening the door and just pop and down the stairs and jumping into a cab and going off to meet a friend for dinner. But I still have the same old stroke deficits that pop up every time I have an infection. I feel this week because I had been ill I had been complaining but no one was listening because my temperature was normal. But then my temperature was not normal and as I walk to the bathroom with someone beside me all of a sudden my leg gave out and I went down on my knees. She was holding the gate belt otherwise I know that I would have smacked my head. I am extremely careful when I don't feel well and I insist on precautions. Maybe that makes me a squeaky wheel but when I don't that's when stuff happens. Anyway they were able to call in antibiotics immediately with no other problems and I am very grateful for that so now today I was able to polish my own Nails my shakiness is down and I think that I'll be able to walk on my own without having to use my wheelchair.
The good eggs in with the bad. I have had many blessings this year and many frustrations. Thankfully frustrations have a short fuse and I don't remember them for long. One thing that happened this year is that my daughter called me. Finally. As many of you had read my daughter had disappeared and I was never quite sure why yet I understand completely. good eggs in with the bad. I have had many blessings this year and many frustrations. thankfully frustrations have a short fuse and I don't remember them for long. one thing that happened this year is that my daughter called me. Finally. As many of you had red my daughter had disappeared and I was never quite sure why yet I understand completely. there's a lot of pressure for a daughter to be a mother's caretaker. I'm glad that my daughter went out into the world and made a life for herself. I would not have wanted it any other way. I am grateful for the time that she spent assisting me in the beginning and that great transition. And I think that she has grown up a little bit more now and hopefully understands a little bit more now that she herself is a mother. And yet there is still a distance now. It's like you can never really gain back lost time and things with people seem to just change or is it just me?
My son and I are at constant. So it's not always 100% good and Lord knows we've had our problems but he's always there for me and I appreciate it. And I have appreciated it when he's honestly told me that he can't be there for me. And I want him do you know how proud I am of him 2 I'm glad he has an outside life of course. In fact I am so proud that he has traveled around the world in his work and his his research with cancer.
But honestly what I wouldn't give to turn back the clock I could just make a laundry list of things I miss because my kids grew up. McDonald's at any age I miss so very much. So it's so funny because when my son and I get together the first thing we do is go get a McDonald's! It's like a tradition! We always travel with a large soda tucked away in the dashboard. And we are now playing this video game stuff together and I must say that that has drawn us closer. I wish that I had spent more time when he was younger but it seem like I took him to stuff but I didn't participate oh I was working and I was doing this and that and the other. Can't do everything but anyway it's still fun to get out and do what I can and be who I am today. I still try to do what I can like put on some makeup and some nail polish. It's so funny how some people will say oh I've never seen you with makeup on and I'm thinking wow has it been that long that I could possibly meet somebody and know them for. Of time and they not know that I love to wear makeup. And then other people will say oh I've never seen you wear nail polish and then I'm thinking wow now that's just plain crazy because I wear nail polish all the time but again they don't see me off and maybe. So the one funny thing is that honest here I have not had a haircut in one year let me figure this out 1 year and 6 months. Now I've put all kinds of conditioning stuff and all kinds of grow your hair back stuff trying to get some hair and I just decided that cutting it was just getting it shorter and shorter it was okay but I miss my really long hair so now my hair is back but it falls out like crazy and it's okay I don't know it's just long and it got long it seems like where did the time go and then I see how long my hair is and I'm like oh yeah it has been another Longyear so I'm not sure what I'm going to do next. I think I just I want to grow it longer and longer and see what happens. I think it's kind of neat to have long hair so I also know of a place that will not charge me too much more to color it so maybe I'll even color it. So far I've just let the gray come in I just stopped worrying about it because I had other stuff to worry about and the gray came in and I thought I can't keep up with it I can't keep chasing it. Besides I'm not really interested in looking younger or younger sake I was before I think I just didn't want that gray hair to show just wanted to do something different I always had it short. Go back to my early 20 days when I had hair to my waist.
One of the things that I couldn't do was get the spinals for my pain relief and I was taking pain medicine every 4 hours which is making me fall asleep and so now I'm taking it every 6 hours I still fall asleep a lot but it's not so bad but I'm just wondering what's going to happen because I'm not going to be able to do the surgery until I get really over all of these infections and to tell you the truth I do remember how much it helped but I always get cold feet again over and over. Saying surgery makes me feel sick to my stomach.
I would say that I'm afraid of the pain of surgery! But of course that's ludicrous when you have this pain syndrome it's already ruining every conscious moment and taking away so much of a life that could be lived. So I think I'm going to have to be brave braver than I usually am no braver than I always am. I'm just learn how to do this. But today I'm just remembering about stroke stuff and there's a reason for that.
Somebody today told me and I've known her for quite a while and she told me that she had 2 t i a s and I listen to her story and I asked her what was she doing today did she have a neurologist and did she keep a regular doctors appointments and I wanted to tell her that there's no such thing as a mini stroke and there's no such thing as just a circulation problem. I wanted her to realize that maybe something needs to be looked at and maybe she should go but I didn't want her to be alarmed I just wanted to go see a doctor. And I said because things happen. And I know that people don't take it seriously unless there's paralysis. Anyway I see told me what some of her problems are there similar to mine and I told her about support group and how valuable it's been and I asked her about had you been online looking for info blah blah blah. All I wanted her to hear was go to your doctor.
And thank you sue for always sending me a little note sending me a little hope in a little love. And now I'm going to sit back and read some of your blogs and have a visit with you all because I've missed you and I've wondered about you and I've needed you and yet you know how it is but it is so nice to feel like I can come back and sit around the Round Table and have a chat again
So today My Doc said right lung sounds like it is not filling up all the way prob due to the edema problem. This year I am really suffering with edema stuff. So up diuretics and hope kidneys still function well in 2 weeks. Then it took me 4 hours to be transported home. The man who dropped me off is a bully. Everyone at the home heard him telling my cna that in 10 minutes he would leave without me. Well I was waiting for help getting in my wheel chair and hang my bag on it. I have a tote I got in the gift store window with matching cosmetic bags and a contrasting scarf on it. I always have it along. But today I failed to bring my charger and my tablet. I failed to put my supportive boot on my foot in the rush to leave. All of the drivers usually wait until I am actually late...it has happened. No one left. But this one was loud. I wanted to leave a friend a pack of cards on my way out. I did because I had that time. Then he went in the busy street loading me instead of the safer parking lot. I was afraid but he said he was in a hurry and parking there was easy. He was quick and rough. I said the belt was too high up I will slip under. There was no over the shoulder. I questioned him about it. He said I needed to relax and be quiet. I did...I called my insurance to make complaint on this driver and this driving company because he was arguing at me for stuff even saying I was not nice to my cna...oh the one I rushed for his sake?? He said I was not a nice person. So I just called someone to make sure he did not pick me up. He got lost...took me to a place way out of the way. LOL!!! He called dispatch saying I refused to tell him the right address. Well it sounded like it but who was listening. I told it to him...while the rep was on phone hearing it all. I could hear her apologize for what was going on but then we got on the right Road and we were there and so I needed him to bring me inside wheel me in and he kept saying he didn't have time to bring me in and I said what are you going to do leave me outside the door and he said that's all he had to do so there was a valet parking there in the valet guy was listening all this so the guy ended up Wheeling me into my doctors check in place like he was supposed to just because other people were there looking at it and he says okay here I said this is fine and he just left not have a good day. So I continue to talk with the insurance lady and she apologized over and over and said that that was really so unprofessional and that she did not want me to be alone with him so she had stayed on the line with me and I appreciate it so much because she could hear all that is going on and I think that the guy was sort of oblivious to it I think he thought that I was just talking to a friend and maybe because I don't think he knew that I was making a report. So then after my appointment was over I needed to go over and get a chest x-ray so I asked the office girls if she could call so that my driving company could take me right over because on the paperwork and also what the doctor had verbally told me was that I was to go directly over to get a chest x-ray. So then the transportation company was saying no there was no same-day appointments and I said ask to speak to a supervisor because if it's urgent then they will allow it so here we go. So they want three days notice and that's fine but it's not always possible. So anyway they said they would do it so I sat waiting. So here comes that driver that had been such a nasty bully and got me lost and I did not want to get in the same vehicle with him again and I said no no no no I'm not going with you. So he left and I saw him drive away and I told the girl at the desk need to get another driver to come out and she was just too busy so I grabbed my phone and I called and tried to make the reservation myself and I said why did you send out that driver when I was assured that I would not have to go with that driver again. So anyway all it did was punish me because they said that it would be an hour or two before somebody could come and take me across the street to the Radiology. If only somebody could have just reeled me across the street. So I sat there for not 1 not 2 not 3 but 4 hours. I kept calling are the people in the office ended up giving me a bottle of juice and a bag of chips so I had a lunch. I had asked someone if they are going on their lunch break if I could give the money and they could bring you back something but they made an excuse and so I figured that wasn't allowed. Unfortunately when it's first it happened one of the girls at the desk at offered to drive me over but I said no because that was against the rules didn't want to put her in jeopardy so she was really nice but I just didn't think that that was something that she needed to do and I was so confident that the driving company would come. so anyway I filed a grievance but all that does is they're going to figure out some way to spin it that it was my fault for not wanting to get in the car with the bully man. Anyway hopefully the sky will not be sent out you see I had already filed so that he would not be my driver but they sent him again and I was in a hurry to get there so this is what they do to me. So I decided that I couldn't go get my chest x-ray because it was time for my pain pill now I had brought enough to stay there for a couple of hours but I never expected that I would be gone like that I wish I could take all my medications for the day because you never know when you are going to be gone But anyway I had to skip this chest x-ray. So I called to see if I could go tomorrow. So here we go. That's when whoever was scheduling said that the doctor always says go to Radiology today and at that doesn't necessarily mean that it's a stat or an urgent okay so in my world when somebody says proceed directly to Radiology today that sounds like that's what I should do. And now I've been told that it was not so important it means that I just sat waiting around to go there for nothing I should have just had them bring me home so anyway but it wasn't just the problem with getting another driver to come out you see they sent that driver to the wrong address again and then they actually sent somebody to the nursing home to pick me up thinking that I needed to be picked up there and more than one driver came in instead oh you're in a wheelchair I can't take the wheelchair. So it was a comedy as I just sat there waiting now I find out that it was for nothing. anyway it's not like I would have gotten home any sooner. but I wanted to find out about getting the chest x-ray and so the final verdict was that I could go next week and that was fine. and I'm actually grateful because I'm so exhausted and sore it's hard to sit in a wheelchair like that. I mean really my back is aching my legs are aching. Well it's because I ended up climbing into a vehicle I had to get out of the wheelchair and climb into a little mini SUV. so my muscles are really sore too. So anyway I just said okay forget it I don't want to talk to any more people about this whole thing I just want to watch some movie and up my dinner and just forget about it and then I fell asleep.
so now I'm up in the middle of the night kind of restless and wide awake. okay so here's the new thing
I have been diagnosed with sleep apnea. And always one to do something spectacularly I have the worst sleep apnea that my doctor has ever seen he told me. so he wanted to show me the chart he said over 30 is considered severe. He showed me the chart which showed 2in of nearly all the blue filled in. he said that I had a hundred and six. he told me that I should never even nap And that I should always have one of those oxygen readers on my finger to check the saturation. So okay now about my CPAP machine well I didn't get the run-of-the-mill CPAP machine I got a BiPAP machine not only does it blow air in my mouth when I'm inhaling it blows air when I'm exhaling!!!
anyway I feel like I'm in a tunnel now they do give you 30 minutes where it's not blowing As hard as it will be blowing later when you're sleeping. So it's actually tolerable at first not pleasant but tolerable. Okay so when I wake up in the middle of the night to take a pill and that thing is blowing like crazy Thankfully I go back to sleep pretty quickly most of the time but when I don't then I just take the thing off. there's a lot of times that I wake up and I've taken it off in my sleep. I feel like I'm suffocating because of all the air blowing in not because of the Mask. I tried the new nasal pillows and the nasal mask but it feels like the air is scraping off the inside of my nasal cavity maybe even blowing my brains out. So I didn't use it for a good six months it just sat there. And yes I asked if I could get the pressure lowered and I even ask if I could try the full face mask. The answer was always the same this is what your doctor ordered because this is what you need. well it wasn't that I just didn't want to use it it was that I physically could not wear the thing. And then a couple of things happened
first of all I signed up for a study called overlap study and they look at why people don't use their CPAP machine and how to help. so I was randomized and I was put into the group that would do some online activities and watch online videos that would tell me all about it and I would be able to speak with the coach. so anyway there were seven big chapters with each having between 3 to 7 modules inside that talked about the benefits how to use it how to clean it Stuff like that. So rather than go with the scare tactic sleep or die there's was supposed to educate you and convince you and support you that this was the greatest thing since sliced bread. So then the coach called a couple times that were inconvenient. Imagine that. I have the most free time than anybody I know but we had to reschedule. so we did and when we were talking I had already finished all the modules. so he said do you still want to talk to me since you're finished. I said that's why I wanted to do this so that I could talk to somebody that somebody is holding me accountable And somebody understands what I'm going through. The first time I talked with someone it was a respiratory therapist he was very knowledgeable and he's the one that said with the high-pressure you have you should not be using those nasal pillows because I know how uncomfortable that can be. Finally somebody that actually understood that I wasn't just setting it aside saying I don't care if I die in my sleep that I'm really having problems using this real problems in fact now I now have another album I'm falling asleep in my chair and I'm sleeping there rather than getting to bed and put the mask on. but it could put the mask on while I'm sitting in the chair but of course I tell myself I'm not going to go to sleep right now I'm going to finish my tea I'm going to finish coloring I'm going to finish watching a movie all these reasons I'm still eating.
so I am short of breath for real. so I'm using oxygen. so right now the oxygen is not hooked up to the mask and I said I think that I want my oxygen hooked up to the mask but the doctor needs to check out all these things I've got to sleep overnight with some monitor thing he's got to look at there's all this stuff he has to do. Another excuse for me to just set the mask aside and wait till another day night.
when I met with the doctor I had been using the machine only because I had signed up for this study I was going to meet my goal and I was going to meet my goal of using it for 4 hours at night. That was supposed to build up some kind of Tolerance get used to it and maybe I'd actually sleep through more than 4 hours but I have to take a pain pill so that's not happening. I'll get back to the pill thing in a minute. so the doctor says I see that in the last 30 days you've only used it 30%. Ben mind for the last six months I hadn't touched the thing. so I said to the doctor well that's 30% more than I've ever used it before. But the doctor ask to do his job so he had to say a lot of scary things to try to convince me I need to use this. the problem is knowing I need to use it and that it's dangerous if I don't is not helping me to breathe Against the Wind Tunnel.
so I told the doctor that when I had been in the hospital for 7 days that the respiratory therapist had come in and surprised me and said would you like your CPAP machine hooked up now. and I was so surprised because I never used it I said no I can't use that and she gently said well why and I told her why and she said well why don't you just give it a try and so I said okay I would she put a full face mask on me and I tried it and there was no big puffs of air no wind tunnel it was just a gentle steady stream and and I didn't notice that I was being suffocated and I wore it every night for 7 days. So I suspected that it wasn't on the setting I usually get and the doctor said probably not and so he looked it up and apparently the setting I was getting in the hospital was a v and the thing that I'm getting right now is 16. So I'm getting a little bit discouraged because I'm really not using it more I'm just feeling a little bit more depressed and when I take their little how are you doing today surveys it's like the more I don't use it the worse I feel Yet even that doesn't make me want to use it. I know I'm being very immature and irrational like a child that doesn't want to take her medicine but breathing is something I do comfortably without it. yes it is scary that if I stop breathing I may not start up again. I wonder if all those little episode things that they're saying have anything to do with the fact that I'm in constant pain. so there's that so because everything has been harder to breathe lately with this fluid from the edema and between the sleep apnea I really wanted to get that chest x-ray. plus I need a TB screening I was exposed to TB but apparently I just had to take the medicine it never went active but I had the Little Dipper kules floating around and so for 10 months I took various medications. I'm sure all is well. But right now I don't know when I'm going to get that chest x-ray because it looks like it will be next week. I really look like I'm always not complying and I know that the doctors will think it's ridiculous and I'm also have my legs wrapped up again because they're trying to prevent another bout of cellulitis I've had two bouts of them on both my legs so now I have to wear those little balloon support pump things and at first they said do it twice a day morning and night for 1 hour well again I have to do something spectacularly awful so that didn't work at all on me.
so the doctor told me to put them on three times a day and perhaps leave them on for 4 hours per session. So where does the living happen in between putting my legs and knees boots made out of bouncy material and fills up with are supposedly fixing my lymphedema problem. so I'm out of them constantly at my legs hurt and I am just swollen but I'm wrapped up so I've had to take the wraps off twice on one Leg . Right now it may not be wrapped sufficiently to prevent the swelling. but I had to take it off because my leg was red and had striations on it. So tomorrow we must take it up and look and see if the skin looks better because it shouldn't be red like that then I'll have to be on antibiotics
so until my wound is completely healed on my heel the pressure sore I cannot get the spinal to relieve my pain that's why I'm taking the extra dose of pain medicine instead of taking it every 6 hours I'm doing every 4.
the end of last year I have that spinal electrode trial and I was going to get the electrode put in permanently which would enable me to go back to therapy walk more get stronger work on my vestibular problems and most of all not have to take the drugs maybe even Beyond cutting back maybe I could cut one of them out even maybe I wouldn't have to take the Lyrica. I was ambushed with these darn swollen legs and kneading to take antibiotics for the infections and then to get a pressure sore on my heel. So right now I never go out and play cards. I miss my friend I wanted to give her a new pack of cards so I did. but she was sleeping so we left it on the table I hope she knows it's from me I never could play Bingo I'm just not my usual bubbly self either I'm tired and fatigued I don't seem to get enough air ever I'm not struggling for air when I'm awake because I do move I guess I'm not breathing at night. the one thing that upset me was when I was in the hospital one of the neurologist from the pain clinic came over and told me that I shouldn't worry about the surgery to put the electrode in right now because I'm not healthy enough to get the surgery and they have to get me healthy enough to get that implant put in. no it's an outpatient procedure but there is incisions that open the spine and that's risky. so I can get to think about this anymore I just put it on the back burner
then I got a message left that I need to come pick up the shoes I ordered you see every year I get a pair of shoes that have diabetic orthotics in them and so I went and had a fitting and pick the shoes and he said my feet were so swollen that he wasn't sure that that was going to be a good fit and I said well this is the feet that I've got to work with I've got to order the shoes now time will go by and I've already waited for a couple months to do it so I just have to order the shoes right now so I ordered them but right now I wouldn't be able to get my foot in a shoe they're too swollen and all I do is wear socks so anyway I'm going to go pick up the shoes and I'll put them with the other shoes and pray every night that I'll be able to wear them someday.
So I can't believe that June is almost over I don't know where the months have gone I don't know where the time is called 6 months I have just disappeared and I can't even imagine what is going on I've missed six months of doing the things that I usually do I'm always in a wheelchair now and it's a horrible and then they yell at me because I get up out of the bed and I walk around and my legs laying down in the chair and I'm thinking I just want to sit in the chair. They need to get me a footstool right now I'm using a box with the pillow on it.
I'm waiting for the home to purchase a proper foot stool or a chair that has a reclining thing. Plus they took away the foam at that was around my bed. they said that they were cleaning it and that was in early May and it laid outside and it got rained on for over six weeks I've been saying you're not cleaning it you're leaving it in the rain why would you do that. So I hope that I get my phone at you know they don't worry about me falling I guess well I'm pretty good at not falling nevertheless I have nystagmus and double vision and I also slide off the bed and I also get the shakes sometimes the jerking and I really am a fall risk. because I haven't had a full lately is because I am very careful and I always ask for somebody to come in and help supervise me getting out of the bed and into the chair so if I do feel shaky there there and I think it helps me go slower and pay attention
SO with all of this dreary nudes I must say that I still call my friend did I grew up with constantly and we talked she supports me and we talked about when she gets retired and she's going to come out here and put her feet in the beach. she says I need to get ready to go on some road trips with her. she keeps my spirits up but I'm afraid I'm going to disappoint her because it seems like it's just one health problem follows the next and I'm not getting healthier I seem to be doing the opposite and I really feel horrible so I just rest a lot.
it is unimaginable to most normal human Minds I think about being in constant pain at the 8 and 9 of their ridiculous scale because no one not even a woman in labor is experiencing the most pain possible but I always say well according to the scale of the worst pain I've ever had this is between 7 and 9 because I actually get to the point of screaming that I need my pain medicine. and every time there's a new nurse I have to go over the protocol of how to manage my pain medicine it's like they say oh whoops sorry I didn't remember to wake you up whoops sorry
so all I can do is wash my hair in the sink in the bathroom and do a bed bath kind of thing in the bathroom because my two legs are wrapped up and must not ever get wet. The bandages are changed once a week. It's just like I have done this twice before but this time I don't have the infection they want to keep compression on so I don't get an infection. so sometimes I'm so happy just to have a nice washed hair and then I'll put a little makeup on just so I don't look so pale and washed out. before I would sit out in the sun not too much not getting a burner to tan just sent out just to get the vitamin D and just to get the sun on my face. So I opted to keep my nails polished this makes me happy to have pretty nails And I love to change the colors. But now I have a nail fungus again so I've had two keep them trimmed way down and also I've lost parts of the nails due to the fungus so part of them will have to grow back again and I'm just thinking please God notice me.
once again I have my days and nights mixed up and I'm just sitting here dictating this because I haven't made a posting in a long time. I kept thinking well maybe tomorrow I'll have a better mood or have better news but it seems that the status quo settling in.
thing that is most painful to me is when people talk about their outside lives things that they're doing and I realize I'm not doing anything. I literally do nothing except occupy space. So the lady that came to give me communion told me to pray about my purpose and what I can do here for others. and that has always been what I've tried to do since I'm here might as well. so it warms my heart when one of the CNAs came to me and ask me some advice and he said see that's why I came to talk to you. he even got pen and paper out and wrote some things down he said something that has been making my soul soar. He I said you always know something about it no matter what I ask you you always have a story and good advice. wow now my own children have never said that to me okay so maybe they have at some point in their lives when they were much younger I didn't know everything about everything. well all I did was just share my own life experience and give them some resources and this young man was wise enough to know good advice when he heard it! So anyway I was so happy that I was good for something that day. now there's this lady that pops in to visit with me and she usually wants to tell me the same story and say the same stuff and I listen and I try my best. anyway this young man who's been my CNA this past week keeps calling me Mom and I know he means well but it makes me want to cry because I miss my kids. so my son he text me and yet it's not the same I say I want a phone call but I never get one and of course he's endlessly busy and I know that but I also know that there comes a point where people withdraw and they don't keep up the pace anymore except for my really good friend who always sends me a box every month and it's really nice they have a token because it means I'm not forgotten.
I can't believe it it's already 3 a.m. and I'm noticing how hungry I am I guess because I skipped my lunch and I only had a little salad for dinner because I didn't like the dinner and I didn't have any snacks. I was supposed to stop at the pharmacy and pick up stuff and then I would have picked up some soup and supplies that I need but that didn't happen today oh I got to find out when my next appointment is and then try to go later. Okay well I have to stop now
. If you made it all the way to the end I thank you from the very bottom of my heart for listening and caring.
! 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. 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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