I have a diagnosis of central pain syndrome.
I need pain pills around the clock.
I have to ask for norco to get it here.I asked the doc here for an order to get it around the clock. She said no. I called my pain doc,my pcp too, and they said they cant help me in here. I set my phone alarm and I ask for it.But sometimes I sleep through becuz I forget to set it. Like this morning I have virus so weak tired. But I awoke in horrible pain.two hours late for pain meds. I could not sit up and asked f
I am in a nursing home.
I packed up a few of my favorite things to put in storage.
I gave away everything else from where I lived for 15 years.
No one here understands my pain or what vestibular means.
I am humiliated by them when they insist some friend or family should take me in and they treat me like a homeless person rather than an ill one.
I have not recovered much since the first 6 months post stroke. I had amazing improvements to begin with and now not so much.
I am more dizzy here
Things You Don't Know About Me (can I meet the 100 challenge?)
I love peanut butter
i graduated from an all girl's catholic school
i tapped danced
i twirled baton
i tried to surf
i had c sections
i have two beautiful miracle babies after risky pregnancies
i was told not to have a second child but I did it anyway
i have one boy and one girl
my Gram had 13 siblings
i am Irish
i love purses
i love to shop
i love animals and wanted to be a vet
i used to cl
I went on an interview for a field placement for school. I was wearing my suit and I was even in my girlie flats=the ones with suede bow top=elegant but still professional ones. They didn't hurt. Of course I had to be driven there. I got out of the car and walked with the walker up a curb and into their entrance. My vestibular problems are much more difficult when I am nervous. They are harder to deal with outside of my house. I was walking up alone and I was so worried I was going to fall
I went to an expressive arts therapy workshop last night. Ok I thought it would be fingerpainting but it was all dance stuff. There I was with a walker right. So I took off my shoes and one foot felt the carpet underneath my foot. We were told to explore that feeling. All I could concentrate on was the other numb one that was getting tingly zaps even though I had taken the Gabapentin. I was on Norco too which is the only reason I can even function and move without pain. But it adds to my loo
I can't remember which movie I was watching, but there was a scene where one mother was saying to another mother: "No matter how much you give and do for your children, one day thirty years from now, one will be sitting on the psychiatrist's couch complaining about something I won't remember saying or doing." I laughed so hard I almost needed a Depends. Because it is so true. I made mine wear that this or that and didn't give money to do this or that or wouldn't let someone come live with u
I went to my new doc in the fancy teaching medical hospital and he is supervised by another doc. He ordered all the stuff I needed and that was the first week of March. NOW well into May and I don't have any PT never have had any OT and I don't have the insulin pen for the short acting nor do I have any vials or syringes for it and my insurance case worker says this is because they don't have the paperwork needed for a pre auth. I laughed and said well this has been going on for months and throu
Are there still knights in shining armor? I went to my doc appointment today with so much fear and apprehension and yes a bitter disappointed disillusioned heart dragging along behind me. I lost one pound so hey yay the appointed started off right (snicker here) and so I go in telling the nurse the mile long list of things--the referrals that didn't go through (oh some signature was required blah blah) and more this-n-thats and why is it that you dont have my records when I was here 6 weeks ag
Do you ever feel that your life is just doc appointments? I am constantly scheduling and rescheduling or waiting to be released (lol) and I am going to docs all the time. I don't feel better. I don't get rehab. I am having horrible side effects from all the drugs. I wonder if I just didn't take them then I would feel better but I fear dying more than wanting to feel better. I don't have any PT never had OT. My therapy has been being at home and doing for myself when I don't have help and just wa
I met with a new neurologist in a teaching hospital stroke center. I broke down in tears uncontrollably when asked to describe the day of the stroke and what happened next blah blah. I said the most annoying thing was this loss of emotional control as I wiped my tears. She said it was common and impatiently asked more questions. As I described my symptoms she jumped up and said she was getting the DMV form to turn in because I shouldn't be driving. I stated I had not driven since the stroke d
I am determined to go to the workshop this afternoon but this mind foggy fatigue is killing me. Everyone around me is getting some sickness so perhaps I am heading there. I am just so tired. I have been going out so much too. One night I slept 13 hours only getting up a few times for bathroom or pain pills. I blame the sleepiness on the pain pills too. I nod off too which is so annoying in public. I drink coffee so much and I never used to. Doc said the meds will do that and that he drinks
My daughter bought me a bracelet that says " Be the kind of woman that when your feet hit the floor each morning, the devil says, 'oh crap, she's up. ' " It has meaning for me in more ways than one. The first is that I have struggled with emotional pain each night as I fall asleep and I struggle with physical pain when I awake (time for pain pill) and I sometimes sob to God "why did I even wake up." even though I know I have so many to live for and my dreams to live for, the living is the strugg
Ever since I got my shiny red walker I have been bustling all over the place but I dearly pay for it the next day and especially at night. I don't do better when I am out exercising. They keep telling me that over time I am going to feel wonderful when I get out there and exercise but so far I enjoy my time out walking but then I am a sobbing suffering hot mess later. I like to go out too much to stay at home for long but it can take me days to recover from one day out if I walk too much too far
I am on a handful of drugs and I have been for months since stroke and I expect that someone is watching over what I am taking. I just found out yesterday that I am taking some that interact together from the pharmacist. I have been taking it for a while he said and he siad that he had called the doctor. He was informing me and putting it in my hands. My hands don't know what to do. I said should I stop them and he said no just talk to the doc and ask him to run for interaction on my drugs.
I started back to school. I am walking slowly around campus to my classroom with my ATV (my name for the beautiful burgundy four wheeled walker) and it has a little compartment under the seat for storage and I bought a little mini back pack that I can fasten on it rather than the expensive storage holders sold online. I hang a cloth lunch bag on it to hold my coffee cup and water bottle which I can't ever be without and my medicine bag which of course is a pretty cosmetic bag. I am all set up. R
I changed my PCP which activated now on the fist of the month so HOORAH I am never going to see that doc again, but the insurance co needed to get paperwork from him for getting me transportation, therapy, a walker, prescriptions, and is there anything else that a doc does and he didn't. I had been in the office numerous times requesting it all at appointments and he had complained that it took endless paperwork. I also called his medical assistant and my insurance company got me a case manager
I have been a tourist these days getting out of the house into the warm sun and going places again. I cut my meds in half too which has been working to my surprise. I have to deal with pain though but I have to balance out having more mind or more pain. I have had a ball out after christmas sale shopping and going places that are not as crowded in January. I am not done yet either. I plan on a few more places on my wish list. I don't have my walker yet but I have been getting out with the cane.
I keep sobbing. I am not getting work back and I am not getting the school thing going but maybe I can still do a class but I am not the person I was and I just hurt so much watching my life and hopes and dreams disappear. so much loss and if someone says stages of grief to me I will scream. what stage is screaming thank you veery much. I am in stage hurts and sobs. I perhaps need more mind numbing drugs to ease the pain of watching my life die while I do not. I try and be brave when I am not a
I have my regular vestibular physical therapist and she is wise and experienced and cautions me to work steady and not over tax myself. I really like her and I have felt I made good progress but I am always impatient to do more so I can recover faster but she says in time in time and assures me that I am going to be better than I am better than I was. So I have had a substitute and she is young and has energy and gets me on lots of equipment. I can hardly move I am so sore. She doesn't stop me
Thank you to everyone for listening and for giving me advice of what to do next. My Christmas Wish for everyone is find some peace and rest in the midst of chaos.
I am up in the wee hours of the morning as usual waiting for the pain pill to comfort me.
I am visiting with the ghost of christmas past and we are sharing some smiles and tears over a diet pop.
I never saw today coming. It is so unfair I say and the universe responds so what.
I am grateful to be sitting here today alive and abl
I went to the doc today. I am trying not to scream loud enough to break glass. I have been trying to get them to send in a request my PT gave them for a 4 wheel walker for so long I am now walking with a cane LOL. PT says still get one, and she has sent request to them again and again, even my insurance company person is sending them memos to please send in a pre auth request for it LOL! So I go in today and first thing they tell me I am there on wrong day and of course I had my little reminder
I walked with a cane!! I walked with my designer decorated beautiful cane around the mall and in stores. I sat and rested in those little rest areas with real furniture and enjoyed a peppermint mocha while I watched people shopping. I waited there for my family to do some running around. Ok I walk real slowly but the most important word here is WALK. with a cane! I know I was grinning the entire time and folks probably thought I had lost my mind. It was a wonderful experience to be just standing
Ok so I am in the official 6 months since the stroke zone and I am pleased that I have made it here without another stroke and that I can see progress for real and not just some encouraged wishful thinking. I need that. I can walk across the room holding my travel coffee mug and go from the couch to the kitchen zooming to the keurig for a hot reward for my efforts AND without the walker at all! This is on a good day with lots of pain meds so I can walk on the evil leg (ok the misbehaving leg). O
I stood up and carried my own little purse and I pushed a shopping cart in the store. I seriously looked normal!!! LOL!! I NEVER thought this day would come. Ok so the fluffy slippers ruined the look but they are the only things that soothe my fat feet these days. But there I was and I just couldn't believe it. I kept repeating I am christmas shopping I am christmas shopping like I was in a dream. I was. Of course I can't drive myself there and I was on huge meds for pain but I was doing it! I
My frig is full of left overs plus more potatoes in the pantry than I know what to do with! I watched movies and napped while the kids took over and cooked a feast for us all. They even put up the Christmas lights outside and the Tree is here waiting for more decorations. I am truly thankful to be in my own home and I am walking and talking. I am sooo very thankful that my swallowing improved to normal now just about so I am eating and eating.
I miss some folks in my life but I am blessed wi
