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 loopydoopy feeling. Ok so ready for expression right. So then we were doing arm movements and exploring our space around us and doing movement that expressed our innerness beingness and concerns fears and feelings. I waved around my arms including my frozen arm that functions but is to me like a frozen steak arm always cold and yet the fingers and arm move just like always. I could even to some ballet fingers lol. I stretched back my leg from hades and remembered ballet class from childhood when it was so easy to hold the bar and bend into shapes. Now it just went back a bit and off the ground a few inches. Progress. I held onto the walker for dear life because of vestibular things like the room spinning occasionally which I am accustomed to now. Then we were going to walk around in between people. wow. I slowly pushed my walker but then the fact of how I live in the world now was so evident. when people walk past me if feels like they are zooming at lightening speed. pT said it was going to be like that typical she said. Now I was in a group of people walking around me. She told them to increase their speed. I of course walk at one speed. slow. as I passed her she touched my arm and said just do the best you can. I was. I am. that is my motto now. do the best I can. But it *beep* me off she touched me and said that. Of course she was being kind even encouraging. But it was like a "how nice of you to join in, but you don't belong and can't do this." Ok so I am superduper sensitive and possibly the world's biggest fool for trying to BE in the world the normal world. What is my "beingness" exactly. What is their acceptance of "otherness" exactly even though they claim to be so enlightened. So then we did a big circle and she called us forth to make small circles or groups according to our level in school or staff. After we were all matched up. there were four groups. Then we were to make a statement to say and movement to show it. So our group did that. Then I had so much pain in my leg from standing and moving that I had to go sit down. Typical for me. I last a bit longer than I used to but a half hour is about my endurance nowadays. So the group went on without me. It was good because I could never do those spinning and stretching limb thingys they did. How wonderful to watch whole youthful movement. I remember dance classes and exercise classes and just the feeling of gracefulness. I had a moment of it last night a glimpse of how my body can still be graceful even if slow but I also had a hit the wall moment when I realized that I am damaged ruined and lets explore how that felt. Is there a movement to show that expression. No, that is too painful and not real in the world of the wholeness beings. So the workshop leader came over to me and said I would be the witness. Nice word for someone who had gone to sit it out on the bench. So my job as witness was to give feedback. Lovely. Now I was the critic. How could I express how beautiful wonderful lucky even just any movement and what was their group feeling who knows anyway. They were all overcoming feelings of embarrassment just doing the activity but none would know the tiny piece of what I was feeling. Embarrassment didn't exist. I was in the grip of the greatest despair and longing and yet someplace there was a space for feeling the freedom to even move the bit I could because I recall the days in the "chair" and now I was doing simple movements whisper of dance.
So then we watched a presentation about expressive therapy. The idea is you have the experience and then explore and analyze what occurred for you what changed you from and to. So the members shared. They felt connected to each other, they felt relaxed and peaceful, they felt free, they felt.....blah blah blah. And so I just sat there drinking my tea in a water bottle contemplating how wonderful that pain pills enable me to be out in public doing things, moving even because otherwise I would be sitting on my couch in horrific pain or in hospital. And I want my doc to know I don't just sit home on my couch taking pain pills. He seemed most concerned I would do that. But I am avoiding talking about how I felt. I did this for an extra credit assignment for school, did I mention that. Otherwise it would never cross my mind to do something like this. But how wonderful and I imagined a group in PT or OT like this but I wouldn't know because all I did in PT was a sit down bike thing and walk with a walker practice. I don't know about OT never had it.
So anyhow back to the feelings I had last night. Wasn't that the purpose? express them? Only I couldn't. I sat it out and watched mostly and took the feelings home. I felt worse than when I cam in sort of and yet again maybe good that I contemplate that I am not the same as everyone anymore. I did not feel connected or connections. When she made me feedback witness I felt like critic and on the spot. I said nice things but I felt like the bad guy, I didn't want that role and I disliked her for doing that to me but i didn't say so and I just went along with whatever and realized I felt given a label because she was trying to include me so I liked her for that. so confusing.
I felt alone with only the walker as friend. It enables me to join in for a moment but that is only a taste. Was it better to have had the moment of freedom? Perhaps if I had been with my own kind. my kind is others with walkers. I am resentful to see others my age still moving and living in the free world. Why isn't that still me? I love me as I am now though too. One year and I am ok even proud of me and confident out there in my world with vestibular stuff going on, limitations abut walking. My daughter offers her arm and we go in places that owners caution me not to fall on precious displays. I smile and say I wonder if I will buy anything in here today daughter or perhaps we go somewhere else.
I still move something. I still life. I still feel. alive.
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 us or remember when they ran away from home and didn't go looking? And no one ever worries about the mothers on the couch pleading with someone to help them with the schizo or psychotic children. And now excuse me but what happened to this group that thinks 18 is not the end of financial responsibility to kids even in a hard economy and that they get a severance pay on top of it in the form of a car to drive away in? But those angelic faces keep us parents being as good as we can for as long as we can.
I had a frenemy recently tell me that she would travel someplace to die rather than be a burden on her kids? I said Why since I paid into this help-me-out-when-i'm-old thing three times over. Besides I said, wouldn't that be like early death? I like to believe my kids would miss me and not want me to die amongst strangers. I like my cozy home base and I hope it is my last living place. Besides I still have much to offer my kids and we still have fun together. For sure this has been a year of the steepest learning curve ever. My young adults had to learn so much so fast but they did it sometimes kicking and screaming. i am proud of them and proud of us. I am a bit of a burden sure since I can't wash my clothes and drive anymore (at least in the driver's seat-I do a mean backseat driver even with visual problems) so I need a helping hand or two. My angels also get me to college so that is a mean twist of irony there. They holler at me to hurry up grab my sweater and lunch and get to the car LOL. they know finishing my dissertation is on the bucket list.
Seeing them regularly keeps me smiling. Oh we all run eachother nuts sometimes but that is how families do and the trick is to remember we love each other. Hard times bring out the best and worst in us and both have to be remembered and dealt with.
I was spoiled this Mother's Day with a balloon bouquet, fresh favorite flowers, a fabulous dinner feast, and some jewelery that said MOM and some other little gifts. I felt like queen for the day and really appreciated the collage of pictures of us all when they were little. I don't know where the time went and how did I get old ? I have had a wonderful gift of watching them grow up. I am still the mom in the family even if I need so much help. There is no shame in asking for that help. In most cultures it is assumed kids will help out.
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 through many doctors and we both laughed at the absurdity of this situation that we find ourselves in. She blamed it on the little black cloud that follows me. I don't know who to blame anymore. I have been to the pcp twice now and asked them to get stuff together. They don't have my records at all even tough I signed releases and no one seems to be concerned about them at all. The doc said to follow up with the nurse. He is a laid back nurse type that informed me that the problem is the doc didn't sign stuff right and I smiled and said I don't care a hoot about who dunit I want it done. My tact has gone the way of my mind. As if I care anymore about reasons. I am on doc and doc office number three. I don't recall having this much difficulty before when I was going to docs for two pregnancies but that was before the 90s. Times have changed. People talk to me with their face in the computer now and I doubt they hardly recognize me by sight anymore. Good I won't have to wear make up to the doc office.
I told them I am out of insulin. I called and called and talked and talked to oh so many people and I said I am going to run out SOON so please get this paperwork crap wound up and finally I called the case manager and said I guess I need to go to the hospital then to the ER and run yall up a nice big bill because i need inuslin shot? Really? She tried to get the pharmacy to override for the insulin pen but she couldn't do it. She promised to call today and tell me if she got the doc to send something or another thing over to someone somewhere to get my insulin. And we had gone over the fact that I called and did all I could do and signed whatever and all of that. In fact this little insulin pen issue has been on the burner over three docs now most of the past year. I actually got the long acting lantus pen. All I need now is the short acting one folks. This is a major cosmic joke right.
But then I found one little pen sample in my frig which saved the day and so I have a small supply so I didn't have to go to hospital. Thank God for it hiding in the bin with some summer sausage. Must have been when I had so many samples. Apparently my new doc office has no samples to give because they were worthless in helping me when I finally screamed to the world I have no insulin.
This is not like no pain meds which they wanted to do to me. This is about life and death and eating. Withholding eating is an unforgivable sin folks. Not that I could miss a pain pill dose either but it would be hard to choose. Pain or Food. Anyway this is just another paperwork mess in my world.
My phone was silent today. NO one called. NOt the pharmacy or the doc office or the insurance case manager who promised me insulin today. I didn't call anyone to tell them the scare is a false alarm because I had one more sample pen to save my life and my mealtime. I feel a slight twinge of guilt but not too much to make me call and say ok folks you got another extra week so don't worry about me. Apparently no one is worrying about me anyway. Why does it hurt that my doc office doesn't really care or know who I am? The insurance case manager only worries I really will need an ER visit so she will be glad I didn't end up there but I bet she won't ask why. I really went through one day of crisis hell and no one came to my rescue. So I tore my frig apart. I found the insulin. I also found a sparkling arrowhead watermelon lime drink I didn't know they even made those. I am finishing it off right now. Someone will be sorry they didn't buy two of them.
I am constantly disappointed by the medical society. I told the insurance case manager that I want a rep to come with me to the next appointment to do the paperwork for the poor nurse or whomever has to do paperwork and can't get it done in two and a half months and perhaps my records can be found in the great abyss of computer records so I actually exist to my doctor. My doc is a very compassionate and handsome young man with obvious ideals about practicing medicine still intact. He is an improvement over the ogre I had before and the woman-prisonguard-turned-medical-doctor.com that I had before that. Before that I had a nice little clinic I went to a few times per year and I didn't cause a fuss. I got a few meds without a fuss at all. What happened and when did I enter this cosmic milkywaymedicalhell?
I am having a fun guilty pleasure that I have this one little long last insulin sample pen. How dare they do this to me with insulin. They have had me on a ride with the therapy and the neurologist with the drug addiction hang up thing but to actually put me here with out any insuling not the vials and not the pens and no prescription for any at all and a week goes by and then I say ok all gone and they say we need paperwork still so just wait.
My family said go sit in the ER and run up a big bill and we laughed over it because we can and it isn't a real emergency right now like I feared it would be. I have finals this week did I mention that the next two weeks I am working on finals stuff. My one year anniversary comes up next week too. I am happy to skip the ER for now believe me. Did I mention that this doc business is the most stressful thing in my life?? when they say reduce stress all I can think of is can I never have to go to any doctor related thing again in my life please?
My doc gave me norco 5mg but I usually end up taking one and then an hour later taking another one. One has never helped enough. I was on the 10 mg for a while because the doc said one pill was less of the tylenol which is hard on liver. But now the worry is over the narcotic dose so they have me on the 5mg but I need two pills all the time anyway. But the good news is doc was true to his word and won't let me be home screaming in pain and he gave me another bottle when I ran out of the 5mg because I always take two not one. Got it?
At the end of this month I go see pain clinic and wonder what they will want to do. I have had some experience with car accident whiplash pain and they wanted me to take psychotropic meds to help with the pain because of some nerve thing they do. All I know is that some can just stooopify me enough to not complain but don't do a hoot for pain. I can't do that this time.
I just cant believe they make a hooplah about my pain meds and then drop the ball on my insulin.
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 ago and signed papers to get them?? I tell them it costs me to pick up any records from the hospital so duh I am not doing it.
So in comes my white knight. I am dreading some more of the same lecture about how I am a drug addict instead of a stroke survivor still suffering (say that five times fast) and so his "how can I help you today" is nice but I am waiting for shoes to rain down here. And so I tell him about neurology fiasco and that I want to get a referral to see another one and be "released" as some protocol they have there blah blah. He says yes he saw the notes and he says that it isn't just about switching me to lyrica because that won't be enough and asks if I will be willing to go to a pain clinic because he is going to give me norco for the rest of the month until someone more knowledgeable about pain (outside of internal med scope he said) can help. Oh he said something to that because honestly I went all foggy with relief and didn't hear much after he said something about my needing pain relief. I said I was so relieved because I am so afraid of being left in pain and this pain is so horrible. He said verbatim that he had no problem being lion hearted about this because "we can't have you screaming in pain at home." I just kept thinking: he gets it, he really gets it. Someone believes I am in pain really truly. Then he scooted up on that wheely chair and told me that there is not a cure for the cause of my pain, but there is treatment that I will have to have probably for the next 50 years. He repeated this. I wonder what my look on my face was but I said I understood and inside my heart I was cheering away! thrilled to death! someone saying I would be treated for pain is all I heard, heck I know there isn't a cure and that only time will tell if the pain goes away yadayadyablahblah but that someone hears my pain as something called neuropathy and not addiction is a party inside my brain. And I heard that someone was going to be Lion Hearted for me. Did I sense that he didn't agree with the neuronutgod? He said that we have to get me off norco but then he asked me if I had heard of a morphine drug you take once per day. wowee I said is that better than norco? I mean morphine sets of the bells and whistles for addiction here folks. Then I said OK I get it that I am going to be in pain and probably addicted to something in the next 50 years (gotta luv that 50 year thing) but then he said I had to sign some contract that the hospital med group has people sign when on narcotics. Ok so I read it and it was all about only getting the drugs from one doc one pharm but then stuff about the doc may discontinue due to it not being good for you or not appropriate and stuff --I'm thinking ok so all drugs are at docs discretion right --and I am signing that I may be cut off from the drug taken for pain. Ok but sure but there will be treatment for pain right> he said it was about selling the drugs basically but I didn't read that in there but we had a thing in CA where they went to lots of docs and pharmacies to get the pain pills to sell. I said I needed them too much to sell no chance of that or going to jail over that or anything me in a cage isn't going to work I watched orange is the new black. This doc jokes and has a sense of humor I found today he said I was laughing so improvement and I said a sense of humor is needed for so many levels of this thing.
So have i finally found a good doc or am I just being jousted along to do what they do protocols and drug things and will I truly not be left in pain kicked to curb and yes trust issue here because I never in a million years expected to be told first that this is lifelong pain probably and the next yes well can't have you addicted to drugs here. Actually what else helps with real brain pathway pain other than drugs? I mean I am all for hypnosis if it works any voodoo. At least I am on way to pain clinic and I said I wanted to see someone familiar with stroke pain oh yes they have two pain docs one that is more holistic and one that is all about anesthesia stuff to the point. that is what they said. so I happen to be going to the one there in that office who is doc holistic. If someone suggest some tea this time I may try it lol. but I want a pill chaser. I am going to fight for the right to have full pain relief.
By the way in the DSM5 substance addiction is not diagnosed when there is legitimate medical reason for treatment. amen.
I will certainly ask for a psychiatrist if they breathe the word addiction to me again. I will not debate the horrible thing of drug addiction until after I don't have pain anymore and crave the drugs. In the meantime the next 50 years may be pain management territory and I want to address that and only that. I so appreciate the support and wisdom on here which has given me the courage to push back against this and question what they are doing for me really. It is so nice to know I am not the nutty one.
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 walking around places.
I pay for walking too much though.
I was told I was going to recover and so disability was denied.
I have recovered some and i see it on good days but i have bad days when I can't read right and I am always so tired. The meds make me just nod off. I hate that.
I am impatient to feel better even if some things don't change.
Like I want to be pain free.
I want to be drug free again with just some lite pills but i am still on the hospital pills.
I am scared because the year mark is nearly here and so this is it then.
I have got out of the wheelchair and walked so that is amazingly fulfilling and I can now see good enough to polish my nails (just have hand tremors now) so yes reasons to celebrate. But I wanted to be perfectly fine again.
I am really ticked off at this feet thing and so tomorrow I am going to remind doc I have a bp drop when I stand so lets ditch some of this.
I have a head fungal thing with some amazing dandruff in my cute haircut so annoying and I spray my awesome leave in conditioner and fluff it through but the med shampoo doesn't smell at all so grateful but it isn't working either. I keep shedding. The bumps all over are not cancer they tell me so always good news but they don't say what next and my dermatologist appointment is months away.
Why can't you get an appointment in the same month you call for it? Are there really so many people and so few available rooms? Hey see me in the waiting room. Not like the paper thin walls give you HIPPA anyway. I hear it all folks. And I just want some relief here.
I have other problems besides stroke and I guess it contributes to this overwhelming stress. I dread the docs now anyway because I seem to have had the collection that didn't go to charm school or maybe even med school but I just can't stand going. I haven't found the one I know more frogs to kiss and all I want is some TLC but i will settle for a bit of cold competent care too. I don't want to do this thing anymore. I want to think about other things like how cute we made the place inside and now I need to shop for a patio set for outside and get a bit more flowers outside before the heat waves comes and ruin them. I want to do something else for a while besides this sick and tired feeling. I probably need a good BBQ steak for some iron strength. I want to go soak in a lake if I could talk someone one into taking me soon as we have some time. Ok I don't know but I think I will just take the dang walker into the water with me. I just want to be free again and not have this stupid life of misery. I want to be someplace that treats the whole person. That cancer center ad on TV sounds great but wait I have stroke and I just kinda noticed it isn't the gold card disease and I sorta get sent home like go get well on your own time thanks or come back when you are in diapers. In other words I am not getting treated at all at this fancydancy teaching hospital. I am giving it one more chance and then I am changing again. I am not one to linger around with a bad kissing frog.
I just want to have some fun in my life and sit on the patio and watch the birds. I need to browse around and see if I can find a soft weathered lightgreen iron patio set. like a french cafe outside and I need some little sunshade thing striped I think. I just want to think about other things besides pain and all this. When did I get like some old folk always thinking and talking about illness and doctors. I went to a bar dinner with a friend and I loved it I was youngish for a minute but it was horrible there with the shinynewred walker even though I love it. I felt damaged. there is that awful word. But I didn't care though because I people watched and we giggled over it and I was just out of my house. that is key. I don't want to even go to the support group stuff because I think I need to be in denial straight denial that anything is wrong with me or my life it is fine as it is thank you very much and let me just go live it please. Oh wait I am on drugs these dang pain and other meds that make the stroke residuals worse or do they keep me alive and well who knows even they don't apparently. Their biggest concern is the pain meds which seem to be the only ones working properly without sides.
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 day and I barely could stand to be a passenger for months but now I like it most of the time and can sit in the front seat again but I know I can't drive safely so I don't drive. She went on about my driving thing which isn't a thing for me at all anymore and I was irritated she kept educating me about the dangers of driving when I am full of symptoms and I don't drive. I wonder if I could find the car in the parking lot with my dizzyhead. I just cried more. Then we finally got to the symptoms after she told me that I would have to go get my records. I paused from crying to ask why I couldn't just sign a form and she could get them. She said they wouldn't send the disc and I had to get it. (I have since called and learned that they will send all records including discs and the friendly records lady said they do it everyday.) So then we talked symptoms and she did her exam and she wondered why I couldn't get to the bed thing and I said balance and dizzy floaty feeling so I could fall so I had the walker to lean on and I just had to hold on to something. I got to the bed and she did blood pressure checks and my bp drops when I stand up and she said it is a side of meds, along with my severe edema (I sure would like to have normal feet in time for my next pedicure) and she poked and prodded and sighed over my feet insisting that they should be doing something. But my feeling of relief that someone would take care of me sank quick when she said she wanted me off all pain meds because she couldn't tell what were stroke symptoms and what are sides.
And so I explained about the pain. As I do so often. I am so bored with pain believe me. But I froze in anxiety panic attack at the thought of not having any pain meds and remembering the torture endlessly going on so many times before. Most recent was the time I was in there getting a head scan and my meds wore off and I suffered hours before my bp zoomed so high and they gave me morphine and some sedative. I didn't sleep. I talked to my family members most of the night. seems narcotics make me talk alot. I finally got drugged up good when the put me in the mri thing. I feel like I am buried alive so I have to be zonked. Now whatever they gave me did the trick because I don't really recall it. But there is a disc I gotta get.
No more pain meds. She said that I have been on narcotics too long and she said and I quote, "That *beep* will mess up your life." I think it is a valid argument. However, I have had a stroke which has done a good job of messing up my life already so the rest is just icing. She said that my pain is caused by withdrawing off the norco and makes my pain more intense and then I take it again---a cycle of pain and drugs. She said that i needed to stop it because it isn't the right med. I explalned that it was all I was on for months until they put me on Gabapentin and I already had tried to wean off many times but the pain was too horrible. She said that I needed to totally quit it and get it out of my system and my pain would be better but that I had to get through the withdrawl pain first.
Am I going to detox like an addict then, I asked? I feel terrified and she saw my fear and said the fear I feel is the addiction. I think the fear I feel is being terrified I am going to be in agonizing unrelenting torture in my electrified leg and be in the hospital emergency room with sky high blood pressure. I said I was afraid it would give me another stroke. She told me that I wouldn't have a stroke because of that..strokes happen over time she said...an artery thing she said. And she said that no matter what argument I give, she is making sure I am not having another rx of narcotics. I felt like a real addict then. I felt ashamed and terrified and I felt I needed this narcotic more than anything else in the world. I feel full of doubt now because I feel real pain folks horrible pain I have had since the stroke and yes it is ruining my life all this groggyfoggy stuff but the alternative is like the other morning. The other morning I had slept hard and I woke to get water and use the bathroom, and I didn't pay attention to the time but I didn't feel too much pain so I didn't go iin to take another set of gaba and norco. One alone hasn't worked. we have been there done that. Anyway I go back to bed and sleep so that's good right? So I wake up in horrible pain because my leg has come alive and is a monster. I get to the bathroom and my pills are in the kitchen naturally so I have to call for help because I can't stand on the monster leg at all and I can't breathe the pain is so horrible and I am crying. Well I am told I was sobbing and franticly calling which didn't go ove well so early in the morning. And I was scolded: Why didn't you take your medicine on time? blah blah. I like to try and wean off of it this is true and I am always disappointed that I can't do past the hours too far and it is misery. So when she tells me that she is taking me off all pain meds for my own good because they make me dizzy and fuzzy, well I know where I am headed. to Hell. Then she dangles driving in front of my nystagmus eyes saying that if I am off the drugs perhaps I can go take the driving test. I imagine myself behind the wheel with my leg spasms kicking and me in pain, and my double vision dizziness and the pain, and my frozen numb hand on the wheel suddenly not feeling it and not being able to steer. I have come to terms with my no drive zone thing but is it really possible that the pills cause the most sides and I could drive again?
I called my insurance case manager and I said you have been with me this whole time and seen how this has gone for me and I am afraid of not having the pills we had fought so hard to get. She was surprised that I was told to just stop cold turkey and kept saying is she weaning you off? I said nope she isn't going to give me anymore end of story, because she said she watched a family member's life ruined by prescription addiction. I stated again that I don't have any history of substance abuse and I got off pain pills before for stuff without problem. I had some in my medicine cabinet for years and it expired. But now I am a begging pleading pathetic mess saying please don't leave me to be in pain in the middle of the night when no one hears me, and pain during the day when I could have been out living my life, sure kinda druggyfoggygroggy but out of my home and bed, out having some quality of life that isn't ruined by drugs but actually possible due to drugs but this is wrong she says so I am confused. I swear that even on this meds stuff I am not without pain so I know what it is like without it. I hate the sides of having a hand tremor and hearing some annoying sounds in my ear in my head what is that and swelling. It is time to try Lyrica? I don't care what I try but i need something. I am not normal like before stroke so I don't know any better what is better off drugs or not. Looks like I am going to find out.
I ask and ask do I have central pain syndrome. My answer now is no it is the norco withdrawal. I think I am going to be in agony again begging someone for help and ending up back in the hospital.
I asked to go to pain management specialist and she said that she would consider it after I get off the norco and if the gaba doesn't work and the lyric doesn't work. I think that is a long time isn't it to be playing around when I already know that this is how it is. But she says that I am addicted so I can't think right about it anymore. I don't believe that. I know pain and it is severely real. I describe it to her and she just says repeatedly you need to get off opiates. I ask if I am addicted then how safe is it to not wean then. Opiates are one that can be dangerous to just quit if you have been taking high dose for long time. I guess that is me then right? But she says she wants me off n.o.w.
So no I have not stopped taking them. I went a few hours past when I would have taken them but I had pain. I can't deal with it now like this because I have class and I can't do homework in pain. pain is ruining my life not drugs. I take a handful of drugs to stay alive and not one is worrying about that even when they swell me up like a baloon with fred flintstone feet. How do I know when I crossed the line from being a patient in pain getting meds to help me then turned into a pleading manipulating addict wanting to sit around high. She said no one starts off wanting to be addicted but then it happens so I have to stop taking them.
I know that I would be happier off the meds and wouldn't be high which I don't really like the feeling but the pain comes again.
I don't know what is right any more but I called my case manager and said all of this and she said to talk to the primary doc about getting to pain management (the neurologist said she doesn't like pain management) but I said all if does is make me sound drug seeking when I am really pain relief seeking cant someone help with the pain otherwise. I have taken non narcotics before but no one offers them now. One of my friends said perhaps I could get medical marijuana. I said ok so I would really be put out of my classes then thank you very much.That can't be better can it?
She told me to go to the support group. I said oh hey that's great but I won't be able to do that if I don't have pain relief. There I go again sounding desperate for drugs. In reality I am angry she isn't even offering alternative medicine. But I know is isn't any use pretending the stroke didn't happen. I feel like I have to suffer and prove all over again that this is really pain.
I gotta go take it now I can't get long past time. Maybe I am weak and whiney. I hear her say I will have to get past the withdrawal pain and I think what about my regular leg pain. Is she saving me?Am I in good hands when she tells em I don't have to do this alone?
I feel abandoned right now. Like an addict. I am chicken to face pain like this again. Now everyone will ignore it and say I just want drugs. How cruel this is.
I thought going to this big place with fancy doc would help me. Are they helping me and I am too addicted to realize it?
I gotta go get some sleep now at least I have some pills to take now. I can't imaging when I run out what it will be like. I only know what it was last time.
Maybe it will ok?
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 lots of coffee too so no help there. I just have to get myself in gear here. Getting showered and dressed is a mt.everest task. then I am ready to climb back into the covers and rest.
I bought some tea with coconut in it. Interesting taste. I try and get some new ones to try now and then. My fav is African Nectar tea iced is my huge favorite.
I feel so left out of life sometimes because I am not going places and other times I just want to stay home and do nothing. And by nothing I mean sleep. then I pop up feeling that I have missed so much. I want to keep busy. I have a week off school and I have a to do list a mile long. I also want to go do fun things too if someone will take me. that is the frustrating part of all of this.
I miss my car.
I had a wonderful relationship with my pretty car. I bought it gently used for a nice deal and they sent for it and delivered just what I picked out I wanted. I bought things to put in it like better mats and a dash cover and nifty hubs.
it took me around reliably and fashionably. I had a nice steering wheel cover and a nice fuzzy thing for the seatbelt. I was told is was a girls's car with all that fluff and stuff. I know.
I didn't get to ride in it after the stroke because everyone drove me around in their car. I got car sick. I hated being in a vehicle. After years of driving for fun and luxury, driving others around in it for work and stuff, driving for road trips for work and vacation, driving everyday sometimes hundreds of mile.....suddenly being in a car was intolerable.
That has passed now and I once again enjoy sitting in the front seat and looking around out the windows enjoying the coastal view once again. I am thankful that i am not hiding my face in a handkerchief of peppermint for nausea (recommended by PT) and closing my eyes just snuggled in a scarf or sweater hiding my eyes. Now I can look outside without feeling that my body was 100 feet away from me bouncing out there and this hole in my chest or a pressure in my body and in my being. Hard to explain what this vestibular stuff was like other than a floating feeling outside of myself while my chest exploded in physical pain in my gut and dizziness. Now I am again watching the road even being a side seat driver again and commenting on how to drive so lol perhaps my time is getting close to driving again. But I see how my ability to maintain depth perception is so off and once in a while my head floats away and I close my eyes to it thankful I am not driving. I know I am all druggy so maybe without that there would be improvement. If I could lose this pain.
I can't decide what I miss more the walking or the driving. I see better now when doing computer stuff and reading. I see improvements in myself all of the time now. I am getting near the anniversary so that is good that there is something good to report on the recovery. it is much more than I ever believed would improve the day I came home after two weeks in the hospital.
I have drug side effects i don't like. I have probs still. I hold onto hope. I listen to others who have been walking in my shoes longer than i have. i am so impatient.
I am always running late but sometimes I manage to arrive.
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 struggle with a handful of meds keeping me alive and my loved ones needing me keeping me alive, but there are days when I am disappointed that I opened my eyes to my own bedroom and not my belief in the afterlife. I am not suicidal ever don't get me wrong. I just get weary of my struggles and impatient to be with my beloved Lord. I am catholic so I would never hurry up and go without an invitation from Him, which would be an immortal sin in my belief system. well it sorta is sometimes I am not saying it is in stone for all people just for me. I think He is merciful and in some instances I believe people have a right to choose so I don't want to go down that complicated road to discuss assisted suicide because I am only talking about how I feel and why I don't find a bridge. I want to be courteous on a blog here so I hope I covered it ok.
So my other beloved friend says that nothing in the universe happens without a reason, and that finding this bracelet was my answer in writing!! We just happened to go into a store looking for some throw pillows and this bracelet caught my eye in the jewelery case we walked by..just in that quick moment in the midst of lots of other trinkets I saw the word serenity on the card the bracelet was on. Isn't it lovely when life illuminates little treasures somewhere! Well my daughter treated me to it because she said that was me. I say that is the me I would like to be. The woman who brings good and integrity into my world, the world. I just struggle to stay awake period too which is also a problem in my life with these meds so I wake more than once a day. We laughed over that too. I cry over it sometimes. I can't seem to be able to cut these meds down because the pain is too much and so my quality of life is what I can do if the pain allows it. I am fighting to keep what I have going.I want my life work to be taking care of others along the way and I just hate how this stroke has made me so selfish selfcentered and oblivious to others sometimes because it has to be that way for me to get through the day sometimes and at other times I am just a bratty side of me still pouting over my losses.
Anyway daughter also bought me a hat which is funny because I am not a hat person but I have been out in the sun lately and she says I need one. I like being spoiled by daughter so I will wear it and it is a nice beachy hat by Roxy.
I went to a race daughter ran in. I sat there with phone camera going and a sign propped up on my shiny red walker with streamers. The sign was to cheer her on and her team. I had to walk so far to get to the spot that I felt I had done my own marathon. I brought plenty of water and some fruit and settled in comfy while the others ran for a while. I sat there in the midst of these amazingly healthy bodies in colorful athletic shoes and I felt like an alien in an alien's body smiling out of my alien's cage of a face. Then in the moment I forgot about that stuff and I was just another mother another parent another person there cheering on supporting on a loved one and sharing in their joy their struggle their goal which is made important to us out of love. Why else would I be up before the sun to sit outside and wait for someone? So I was out in the fresh air around the land of the healthy living youngster and it was contagious. I was glad to be alive and I was still part of it because I am part of a family, my own, and the bigger one, the human persons all around me, making room for me to take photos, smiling at me while I made my snail's pace around everything back to the car, and sitting there watching my fellow journey partners finding their paths in life. And when I went to get a coffee (I was so sleepy) I discovered how blind I was thinking it was all young healthy persons in this race because there were people with canes with number bibs ready to walk. I rejoiced and wished I could manage to take this walker for a spin. But I count my steps in feet and not in miles or blocks walked. So I vowed that next year I would join in no matter even if I do a block and a half, because I want to be a part of it and I want a pair of those colorful athletic shoes and to say yes I participated in the race. I didn't like not being in and sitting on the sidelines. I don't want to watch life run by me. Then later when alone I had a good sob about how unfair how painfully unjust and a rolling hardy pityparty soulful howl at the moon wretched primal scream at the universe that runs such a ponzi scheme of life. Then later I apologized to the universe for feeling entitled to more and rejecting of the lessons I am learning and for the second chance at life I was bestowed, gifted, and accountable for. Then I looked online for some colorful athletic shoes because who needs to be in a race to look good.
So me and my hat and perhaps my well fashioned feet if I can get into a real athletic shoe, will be going out more often this spring break to enjoy the sun the outdoors and the people around me. It is such a shame how we get together in public and we are so afraid to talk to one another. which is my most annoying trait according to my daughter, I talk to everyone anywhere. I like the Irish saying that strangers are just friends we haven't met yet. I was recently sitting in the cafeteria of the hospital I go to and I was chatting with someone sitting at the table and I shared that I believe that we are changed by each conversation and encounter with another person, no matter how small and insignificant it may be. I carry that energy with me. I can have an anger hang over for days because someone was rude to me or that I got impatient with a situation even if it was me in the right. I was recently reminded that every anger situation takes a chemical toll on the body as well as an emotional toll on mind and body. I am trying to be more mindful and joyful and keep my blood pressure down which I must say is horribly hard in the middle of the messes with my medical and insurance stuff to deal with. But if I remember that I am responsible for taking care of others as well as myself then it helps my attitude in dealing with the daily frustrations. I am thanking people more and doing random acts of kindness and hurrying less. I want to be a better person and not a bitter person. I want to make sure I seek joy and not listen to any pain in life. Pain may be overcome. Maybe meds all my life or not but I won't be held prisoner by pain.
I recently read some books by Yalom about existential stuff like facing death and in one of the stories he told, he mentioned that he believed we face death by how we saw our own parents face death. it got kinda heavy there but I took it as the chance to look at how I was doing the job of modeling to my adult kids what meaningful life and meaningful death is all about because one goes hand in hand with the other. I never took a minute out of my busy life to think that I was going to really die someday. Who does? We like to forget about that. I am going to a workshop this weekend about women and existential stuff which I am really looking forward to because I want to be a good mother and a good role model to my children and I want them to remember me being strong, being human ,being honest, being the me I like to be, being the me I despise but forgive, being alive with joy, being an adventurer in all of life. I will have the hat and shoes for it. And I want to appreciate every morning I wake up and remember it was a gift. I 'd like to kick butt and add some good in the world if I can too. I think I won't be doing anything amazing but I hope to be amazing which may spread the integrity of the universe around.
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 too long. I now have to say nope I am not walking anywhere today so I can rest and recover. I am not in any PT right now because I changed PCP and now I have referrals and I have to start all over with every doc I was seeing before which I think is a fab opportunity at the University Hospital. The frustrating part is that I am going to be starting over with a general screening and then need to have a referral to a vestibular physical therapist again. I want to get in with the stroke specialists if I can. So in any case I don't slow down because I am going to class and when I took the shuttle bus and walked I was in agony the next day because it was just too much. So I need to get driven close to the door so I don't walk much at all. Just because I can walk doesn't seem to mean that I should when it means that I just hurt so badly and not just in my usually painful leg but in both legs. They remain clueless about my swollen legs and feet so perhaps soon they will find the answer. walking just seems to increase the swelling and pain despite their claims that exercising is going to cure this. In fact exercising is a nightmare. I love to walk and I love to be out in public singing Ariel's song "I wanna be where the people are...." so I am not going to be sitting around. no danger of that. But it hurts. And it hurts more than the pain killers can cope with. It means I wake up in horrible pain after a day out walking around. I am ok walking around the house. it seems to a bell curve for me and has to be just the right amount of walking. I am thinking that I want to start fighting now for scooter but I really need to get up and burn calories. Not to mention I like greeting the world standing up. I am so frustrated that everything causes so much physical pain and that I am do drugged up. Doc asked me if I felt fatigued. I stated that I felt drugged up so I couldn't identify fatigue if it had bells and whistles. It is so bad that I was in a class in this large room set up like an old globe theater and I was in the top row near entrance in handicapped seating and I dozed off and dropped my cell phone on the floor. I met the gaze of another student watching me be just another old person nodding off. I am so embarrassed by this nodding off thing but I can't just stay home and sleep my life away. So I got a new phone case again.
I was told by another woman close to my age in one of my classes that I don't look like I had a stroke and that I was lucky that I didn't have any thing wrong after the stroke. woah! I guess I was clueless about stroke too once. I told her that my right side was weird now because my hand and arm are numb but they work but I have burned my hand in water and on tea pots and that my leg had nerve pain which I explained as lightening in my leg that makes me want to amputate it and puts me on drugs to deal with it so I am high when she sees me I explained and we giggled here. Then I explained about the vestibular things which she didn't know the word so I said that it is double vision like being drunk and dizziness with nausea. I said the hardest was that sometimes I can't read because my eyes bounce and jump so tracking a sentence is hard and frustrating as I reread stuff or have to just quit and I always loved reading and I need to read for school now too and it has improved but it still goes on and on. Then I explained that I can't drive anymore or do things alone like shop, shower, use stairs, and things that could be a fall risk which is most everything in life. I said the drugs make me sleepy so I nod off before I know it like right in the middle of texting in a boring class. I am sure the woman was sorry she asked by now but I continued to tell her that I also had an almost synesthesia experience with emotions and sounds and colors and patterns. I can feel these things physically like a strong tightness in my chest and gut that can hurt when a sound is unpleasant and loud or a color is too vivid. I can't ride well as a passenger because motion is also experienced as a physical painful sensation. Then I smiled and said that brain damage is a fascinating thing to experience. She smiled back in a polite way that showed her relief I shut up finally and she said "wow i couldn't tell" as if. Oh one more thing I added, " I can't balance so I walk real slow with this" and I patted my walker.
I think most of the people around me think I just have some back problem or something that makes me walk with a walker or a chair or maybe some car accident that did it. When I tell them though I am listening to myself and thinking "OMG how do I even leave the house with all this?" But the amazing thing about it is that I just keep on like normal as if I am normal because in my mind I am still just me and I think I am going to pop up and skipdance down the hallways and stairs just like before. If I stop and think of it I may sob and sob forever never to be consoled for the things so gone forever. I don't know what the movie Gone girl is about but I do know that I feel just like that title. I am hidden in plain sight too I guess from the reaction of other people. They don't know when I am looking at them that the room is moving and that I am trying to make their face stay in focus and not bounce around. I take notes too but they don't know that my hand is cold and numb and just weird because I have on a pretty ring and I write with my favorite pen or type on a computer. I guess no one knows I am in pain at some level all day every day unless my pills are working for that window moment. I always think they can tell my speech is weird now but I guess I'm told that I speak a bit slower and more deliberate and so it isn't too slurred up unless I get too tired. I am amazed because in my mind I am so damaged and everyone can see it but perhaps other people are paying more attention to their own insecurities to really focus on mine. But on the other hand it is frustrating when even my own family fails to understand that my daily life experience is being in a carnival fun house where the floors rock and you have to hang on and you look up and see the multi mirrors with every reflection all distorted and hear sounds like whirrling and whistling carnival sounds too loud or too muffled. I get around good in my house now though. They don't expect me to fall apart out in the world of stores. Going outside is like suddenly floating in outer space feeling so I need to hold on to an arm or a walker so I don't float away. What? They think I am nutty. The depth perception all the layers of outside...I try and get them to look and see it. I keep screaming inside and outside that my brain is so far from normal now and even if I get this or that back a bit at a time I am going to be a bit more uniquely eccentric than I used to be. I am presenting a class project next week actually two days so I wonder if they will notice I am not good enough and maybe I am becoming a great actress as I fake it along or maybe soon I will fit inside the mold if I keep clicking those ruby red shoes. I am learning to live inside the tornado.
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. So there seems to be an App for this! Could I do it? I didn't think to ask. I am also between doc and don't have an appt until later so this has to wait.
I have so many drug side effects as it is. I hate the one that is that my hands will do this kind of jerk thing just slightly but they seem to drop not shake but I worry that is next. One of the drug interaction symptoms is leg pains are you kidding me I have leg pains. Ok I have nerve pain going on but I have aches and pains too. I mostly hate the grogfog and how I can just nod in public so awful. I don't wonder that I don't just pass out in a coma with the handful that list drowsiness on the label. I am so sedated that when I feel stress I wonder what it really is on the Richter scale.
I go to class and I need to wean down to think so I cut down in the day but I still need at night. I hope that in the new doc place that I can go to pain clinic and get some new ideas like biofeedback or other things that are kinda woowoo but may help. I read that when the nerves are overstimulated with pain that they get used to that and so they fire up pain more again. some kind of loop. I wonder if I got that right but I think so but anyway I read that and thought maybe it worth a little try. I am surely desperate now but as long as insurance is game for it I will try it. But not acupuncture as I am terrified of needles as long as chop sticks.
I walk more now because I have my shiny new red walker. I put a bit of decoration on it to personalize it. I would like to have some snazzy hubs on it but not too crafty today. I need some more ribbons on it though gotta shop. Anyway back to topic.....I walk more so I get more swollen at end of day despite them telling me that it should help swelling so I must get do to do something about this swelling. It is sandal time here again and I want some manicured feet out of these shoes.
I am walking the campus alone now which is something I couldn't do before. It was scary at first but I am doing it. I am planning to get on a shuttle bus alone and travel alone in a couple of weeks. I feel ready and if I need help I can ask someone. I am pretty good but slow now. My vision is still poorly but I am getting accustomed to. So I hope that it will come together with some new med evaluations to keep me safe in health but not dull my mind to living. I also notice pain is lower lately if fluctuates so I hope that is a good sign. I also notice that sometimes I get a weakening in my leg when I walk or stand, It is just for a second and weird. Physical therapist said that it is my brain losing track of where my leg is for a second. it feels like it is going to give out so it scares me. But so far is hasn't so therapist said it wasn't something to worry about and that it was good practice for the brain when I walk.
I will take it as good news.
I look forward to the new doc world and hope it offers me some hope.
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. Right now I need to get a nice light computer so I am looking around. I don't like the ipad stuff and I have a notebook but it is heavy compared to what is out there now. I am on a really tight budget so I am looking for a bargain too. So if anyone has a word of recommendation for what they use or would use if buying I sure could use a tip because I think that for stroke recovery using a computer is vital. I put my notes on powerpoints so I can sort and remember better.
Anyway school is both a stress and a relaxation for me. So nice to be out in real life clothes and have a place to go and show off my new nail polish collection I got for christmas. And it is a stress to be up and showered (that is more work than it used to be) and to get there on time. Not to mention homework projects. I am both grateful for something other than medical this and medical that to think about and at the same time I feel like a fish out of water too old and too fragile to be in this room but then I get there and we talk together and we are always eating for some reason in my classes sheesh. I have fun I must admit. Even though I have two teaching presentations to do coming up and I am scared stiff I still am enjoying myself. I say that but I cry alot over this too. I am really emo these days and the slightest thing can take hold of me and become a bloomin anxiety that i feel as a physical knot in my chest wall and I have to really focus on some mindfulness to get rid of it.
I am having a terrible time with family these days. I am always needing help and wanting this and that and they are having their own issues as caregivers of course. I am not easy to deal with and then again neither are they. We are just not accustomed to being in eachother's way so much. I am like a nuisance when I start doing something and then need help finishing and they want things on some schedule. Well I don't know when I will want a piece of toast and it may not be on a schedule anywhere. Little attitudes build up and when I hear we need to talk I know that I am going to be in trouble for something. I feel reduced to a child. Except that I still have grown up responsibilities.
I was in an argument the other day and I felt light headed and lost my balance and fell lightly not hurt but my pride. I can't even have a good argument anymore. I can't handle real stress either. I have to guard my emotions for many reasons. The other is that I have to keep my hand over my mouth because I am way too honest sometime but that also takes a toll because then I hold it in so I have a journal to vent in and I have to keep it hidden so no one is hurt. blackmail material. I don't know what to do sometimes because I feel I am not allowed to express myself or it is complaining and not being grateful and that is how it is taken by others so they tell me. So now I haven't said anything about the christmas decorations still up in Feb but it is on my nerves. Just little bothers like that and I can't take care of it myself which is frustrating.And then I get the rolling eyes like I just asked for cheese from the moon when I want something. Loss of freedom and ability is going to take some getting used to.
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 and she called and faxed endlessly and I still never got anything done. One blamed the other too and so what was I to do! The insurance company case manager suggested that I change doctors and suggested I file a grievance with the insurance company against him. So I did. I also filed for an independent review at some state web site suggested for when the insurance or doc isn't getting you what you need. That was an easy website form and I suggest it for anyone who has a complaint or unmet need. They sent me a letter that they were doing an investigation and I would be notified within 30 days so at least someone would be accountable and perhaps the responsible parties would do what they should do. The insurance company wanted me to go to my scheduled appointment with a representative so she could get all the paperwork completed and signed. I was thrilled that someone was going to help me at last! Then the doc office called me the day before my appointment and said the doc was not going to be in the office and I needed to reschedule but they didn't know what day to reschedule me so they would call me back. The caller also said that the things that the insurance company were saying were not true and that the doc had sent them stuff. I replied that I didn't know what to say to that except that perhaps stuff needed to be resent then because I didn't have my walker or other stuff and it had been months since the physical therapist faxed the recommendation to order one. I said all of these things were long over due by months for some reason I didn't know. I didn't get a call back so the next day, which would have been my appointment day, I called and said I was wanting to reschedule. They said my appointment was not cancelled and I needed to be there! I said I couldn't (the rep wasn't going to be there now since I informed her it was cancelled) so I asked to make another appointment. I did get another one, and then I called around and got a name for a new PCP and changed it at the insurance company because I knew that since I had complained they were messing with me now. The appointment day came:
The insurance company representative met me in the lobby and we had time to chat and get to know each other while we waited in the lobby for over an hour and a half despite repeatedly asking when would I be seen? She asked me if I usually had to wait this long and I said that an hour wait was the usual and perhaps this was punishment or they may hope we just leave. I could hear my doc arguing with someone in the back about light bulbs being out and I could hear the medical assistant on the phone with a fax machine company who was not fixing the machine despite their paying rental fees. I told this to the rep and I said it sounds like they have house keeping to do rather than to see me. I finally had to use the bathroom which got me it the back anyway and then they put me in the room to wait some more. The doc came in and immediately ranted on the insurance rep that he was upset that a grievance was filed and it never should have been because he always did get the paperwork in and got me the services but the insurance company was to blame for everything and so he ranted and raved while the rep said well can we just get this done today and start fresh and the doc continued on to vent enthusiastically and I worried he was going to stroke out. I finally was satisfied my blood pressure had risen sufficiently and I said loudly that ok this was too stressful and could we please do the doctor appointment stuff now! The the doc noticed me for the first time and then started on about pain management patients drug seeking and that he had not drug screened me because the insurance company didn't reimburse him for the pee cups, that he had way too much administrative things to do for me, that I was not the type of patient that he wanted. And those words resounded in my ears over and over. Then he said to me that all the insurance company wanted for me was Deny, Delay, and Die. and that is a quote his three D's. I could ponder that for a while except that an insurance rep was sitting in the room with me advocating for services to keep me alive and with a good quality of life considering trying to get me a walker and transportation services. Then the doc switched gears and signed all the paperwork he was asked to sign and he got me samples and kept saying to the rep "see I am a nice guy." He was very upset that the grievance was on some record that was in his eyes not fair and not accurate because I never asked. The case manager has a record of asking for things on my behalf that I couldn't get done by the doc and these are things that the insurance co was saying they would approve if they got the paperwork for heaven's sake.
Every time the doc left the room to get samples or to do something, he kept going in and out for some reason, anyway the rep would roll her eyes and say OMG and at the time when the doc was talking about me being screened for street drugs she said to me "I don't know how you are getting through this" and she repeated this again at the end too. The doc got my stuff signed and the sample meds that he could have just written a rx for anyhow but seemed to want to impress her, and then he went on the rampage again even though enough had been said. He repeated that I was not the kind of patient he wanted and that he had considered discharging me when he learned about he grievance (the explanation for the cancelled appointment) and that the medical director said he couldn't do that so he didn't but that he didn't want a patient like me. He kept repeating that. I had already changed him from my PCP but I didn't say that he wasn't the kind of doctor that I wanted. I could have. Instead at the end when his hand was on the door, I apologized for not being the kind of patient that he wanted. He said it was only that it was because he prided himself on having a good relationship with his patients and that I had not communicated with him (even though he had said that he told me that the insurance co would not cover a walker and then the rep said yes they would if he would sign the recommendation for it, so there was communication prior to the complaint) and that there was too much administration stuff to do and to deal with my insurance company (who came with all paperwork filled out for him to sign as a last resort on my behalf which is why I don't change that too) and then then he left. As the rep took hold of my wheelchair to help me leave, she said, "how fast does this go?" and I shared the thought including "not fast enough."
We both were happy at least we got what I needed. Well done.
I went right over and immediately picked up my shiny dark red walker and then I went to school. Life had already moved on. My kids cheered me by taking me to one of my favorite restaurants that is fun loud and lively and I used my walker to walk along window shopping and I found a bracelet I liked and bought it to wear on my good wrist that isn't sensitive. It is so much easier to walk with the walker than with the cane I had used simply because I insisted on getting out of the wheelchair and pushing the wheelchair was not easy. I am happy I can do the cane around a bit but the walker gives me more stability for balance and it also gives me a place to carry things and to hang a little lunch bag to hold water bottle and my coffee mug. I can put my book bag on the seat and loop the handles so it doesn't fall. The safety and convenience is wonderful. And isn't it nutty but I love the pretty color of it too rather than a boring black oh just the artist in me loving cheery color and it doesn't hurt that it happens to be one of my fav color of nail polish red!!!!!!
I will never see this doctor again but I will never forget the look on his face, in his eyes when I came in the office that day and he told me that I was a patient that he didn't want. I didn't need to say that he was a doc I didn't want, because my complaint had said that already. He had already told me that I was a patient he didn't want by not making sure I had the goods and services I not only needed but I deserved as a human being, a person surviving and living with illness. He obviously forgot that Hippocratic Oath years ago and he is a doc that was not the role model of health and fitness himself, neither physically and certainly not mentally. But I went there trying to get medical care and I put up with insults and abrasive if not abusive treatment and when I complained then the staff had a word of reproach and retaliation (I am so glad I brought the insurance rep with me to that last appointment) and all along I had a family member in there with me but no one seemed to get it that this guy was a kook so it was so nice then the rep was reacting like I do and one of my family members said they did'nt speak up because they too just wanted me to get the stuff I needed and not make "waves" and what in the world were we doing thinking that "nice" would ever get me what I needed with that man? I am leaning toward considering this abusive and neglectful but it isn't on the scale of report it or is it? I am going to try. I would hate to think that another patient is suffering the hateful things he doles out in some passive aggressive manner by withholding things (how many months does it take to write a rx for a walker) and other nutty stuff for nutty reasons and is this doc even sane enough to be working with patients? The insurance rep said that she was certainly going to pass on the information to her manager and I apologized that she had to endure all that on my behalf and she assured me that she had never had that happen before when she accompanied a patient before. I had frequent conversations with my insurance case manager and she said that the doc office would do one thing and then not other things and then say they were overwhelmed which was probably true but not an excuse. Well that doc succeeded in getting his wish because i am long gone today.
And I know I am not the kind of patient he wants not because I come with lots of paperwork attached, but I come with lots of expectations to be treated properly and with dignity and I have no hesitation to be a vocal self advocate (nice word for complainer).
And I have no fear of bullies not even the ones in white coats who end up in therapy just as much or more than anyone else LOL.
I am now terrified that the next doctor is going to cringe when I walk in the door. At least now the saying walk in the door is real because I can use the walker longer than the cane so I will be walking more. I don't usually take so much work and if that doc office had done things as they came up there would not have been so much to do. I am going to have a university hospital doctor now in a university hospital group now. I will get all new referrals now and no I won't feel guilty for that paperwork because they get a paid client now and look at all the services I will need and will be paid for! I think I am just the kind of patient a health care provider place wants because I am going to be a constant and regular consumer. and my insurance company is sending rep to get me services too so they are white hat guys too.
oh and as for the street drug issue that fool doc brought up, I say shame on him because he should have been screening if he suspected and help offered and it shouldn't be used as a weapon statement in any way. I don't use medical pot even so I would have tested clean even from alcohol since I am on enough drugs to keep an elephant down and half of them say don't use with drinks. I miss a good margarita with extra salt that I used to make and oh my fav sangria with an umbrella. Oh and my response to his silliness was to respond not to the drug accusation but to say that I have requested to the insurance and to him numerous times that i be sent to a pain management clinic and could I get a referral right then for one and he then said well he had a problem getting that with my insurance while the rep is sitting right there and he didn't even give her the referral which is ok because I am moving on but just saying here. So he tried to make me out to be on drugs or disturbed or confused and filing complaints like crazy person. So my point is that I am fearful now that I am going to have that label because of his retaliation.
I am not going to be jaded because of that one rep that came with me and then said How fast can this go? which said it all to me that she understood that i just had the doc visit from hades in some kind of SNL reality. One person can make a difference. That insurance rep made all the difference. And objective witness to it and her kindness. She could have remained completely in a professional role and neutral and just said stuff to the doc but she didn't. When it got really nutty she was supportive because she was real, a real person responding in a real way to some alternate reality there but she reacted normal which validated it for me. That is a protective factor. She handed me that shield that said this isn't real so don't let it get you down, we can erase it later because it is wrong and shouldn't be happening to you. I can't really say when a stranger has been so supportive in such a real way. I will always remember her. Then in my jaded mind I think what if I was being played and this is truly my fault in some way and even the insurance co is not on my side. That is the strokeness of me now that am I sure of what is happening or not. Nah I am not going to be paranoid today.
Ok lets talk about my new red walker! Btw thanks if you have read to here or skipped to here and for listening lol because I am writing a novel here. I dont want my only role in life to be a patient.I don't want it to matter if a doc likes me or not because I am the customer and my opinion counts not the doc's and so what it is not a personal rejection (when it feels like one that is not reality) and so I just had to turn the day around and it was our fun day out anyway so it was good in the end. My new walker is fab and I have taken it to class and I bring all the stuff I need so no one has to carry it for me and I have it right there too so no reaching for it.It's my all terrain vehicle now and I am calling it my ATV lol because i can walk on the uneven places better with it than with a cane which is only really good for indoors for me. I have the seat too so I can rest and it makes a good seat for my book bag of course I have to have that loaded up. I am thrilled to have something that I can boogie with because the cane is so slow going anywhere. I dont feel embarrassed to be using the walker because it gives me so much freedom and I am standing. I cant tell you why standing is so important but it is to me. I want to be eye level and not looked down on. such little pride things mean alot. Dignity is something so lost that I am reclaiming.
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 pay for it later if I overdo it.
I have changed my primary doctor now and I am waiting to go to the new one which is in a major university hospital and I have high hopes. I will need to get a new neuro and new PT and everything. I will even be able to use the pharmacy there. It is going to be all in one big happy family there so I can get the referrals hopefully. I have one more meeting with the old pcp and a case manager from my insurance co is going to meet me there in order to get some paperwork signed so that I can get my walker that was recommended by PT months ago and other things like signing preauths for meds and insulin pens with these teenytiny needle tops. I had an appt this past week and the called and said must reschedule due to dr not coming in and then in the morning they called and said can you get here now the doc is in. They also claim to have sent my insurance co all this stuff to get me what I want and need and the insurance co says nope never seen the stuff. So I asked if someone from the insurance company might accompany me to the appointment in order to physically pick up the stuff that seems to be devoured by the fax monster all the time and to my surprise they said they would do it! I am very pleased indeed. Complaining comes naturally to me and it always irks me the easy way people just lie lie lie. I had to wait two hours for a shuttle one time and then I filed a grievance and the letter came and said the dispatcher said they picked me up in ten minutes. LOL. I wasn't out for money I just thought they should know what a lousy shuttle service they were using. In any case I am not put off by all that. I believe we all must keep them accountable and not stand for shabby treatment that insults our dignity. But I do know when it is time to shake off the dust and move to the next township. I hope to get some of these loose ends tied up at the next and last appt with the insurance rep. So what does that say when the insurance rep is the advocate for goods and services LOL aren't they supposed to be the ones trying to wiggle out of things LOL.
It is like Spring around here in fact the flowers are fooled and are blooming. That has increased my need to get outside and breathe fresh air. I tend to try everyone's patience wanting to go go go. I always was a goer outer. That was my cure for depressed thoughts to just go out someplace and sit on a patio for some lunch after a day of walking on the beach or pier or being out on a boat. I don't do the boat now too scary and bouncy for me and my vestibular stuff. The world is unbalanced enough and I never have sea legs now. I can't even stand the thought of going on a lake for heaven's sake. It doesn't matter though because friends don't even invite me out to their homes anymore. So many have gone off radar. I decided to hardly notice and to just get out with family now and go to tourist places no one knows us and we just go around awhile. I don't have to face the looks of pity then. It is nice to just go out and I am now ME and no other has ever existed. I am also determined to not allow my life to become just one big medical appointment life. I want to do something else too other than just be a patient.
I am going to class on Monday.
I have discovered two new teas: Love tea which is lavender, rose,and camomile. The other one is called African Nectar tea. That one is good as iced tea and hot tea. Wowee it is my favorite of the two. I buy them at Jimbo's which has a large tea section. I make huge pitcher of passionfruit iced tea and I sweeten it or add lemonade like at the big coffee chain store. can I name that on here? I am now always interested in food. I organize the shopping and pantry stocking. I menu plan for the first time in my entire life. I never had time. I bought stuff and then just grabbed it out and said ok so here it this and that so lets make this. Since the kids were grown honestly I worked and went out to eat or grabbed to go so often. I miss that. I miss having a craving for it and then just driving out to go get it. Now I can't drive and it takes a negotiation or finding someone free to take me. So now I stock the pantry.But lucky me I found some new teas. Tonight is fish for dinner. I live for seafood. I make a mean tartar sauce. I can't cook like I used to either. It is frustrating to not be queen of the kitchen now. I try sometimes but I need so much help with it all.
The boring has become exciting in my small bubble world LOL.
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 always getting phone calls or invitations and when I know that life is moving on while I stopped. I stopped. I changed. I don't know what is left to work with and I keep trying to do what used to be and it isn't any longer. I know I need to accept it and I should just stop trying to reclaim a life that is dead but I am not dead. I feel in limbo. I keep trying for stuff and they look at me like how cute and inspirational but not going to really work here though. I have become a joke. I am having a down night now and I know it is the disappointment of not getting the fieldwork I had last year for school and I don't know what I was thinking setting myself up for this disappointment. I can't do anything on all these pain killers now and I just hoped I would be able to later. It is later and I am just barely hanging on daily. I just have to survive daily now there is so little room for having goals like other people get to have. But not many people are going through the day dealing with pain like this either. What am I doing thinking that a life is going to happen. some where in my mind the goals still live and it is hearbreaking to watch them die. There isn't a pain pill strong enough to stop the pain of disappointment. All I do is ask why am I here to watch this happening and since I have to be please give me the strength to do it because nights like these it is just all consuming. words like grief and loss don't begin to cover it. I guess I wasn't ready to drop and retire yet and I thought I had time don't we all think we have time.
I am physically taxed out today and so it makes it harder to deal but in reality I would never be ready for all the disappointing news I got today. it is all such a challenge and just the small things feel so overwhelming at times. all I can do is sob. then what is left but to do what ever is next. I just forget in between times how painful and lost I feel when I cry. everyone has their own problems and I feel like I always have mine around and there isn't anything that can be done for it. I don't blame them for not putting me back in my life. it is gone. I don't see the new one yet except just sitting waiting for what I don't know. I keep thinking that the worst feelings are done and then I get my heart broken all over again. I go though my list of comforts again. like fuzzy robes and caramel coffee. the bad thing is that when I am all upset and crying then my stupid leg kicks and jerks so agonizing and abnormal. I feel like a freak show. This torture goes on physically and no one has answers or treatments for me. I am not going to want to get out there and go interview again but I don't want to sit home either but what can i do now? I don't know but I am overwhelmed with lots of annoying problems that are piling up right now and I feel like if I can deal with these home things then I should be able to do a work thing but people just see this disability. I guess I didn't know how it is for disabled having to prove and prove over and over. I just was not close to retiring and I am bored and lonely while everyone goes to work and have people to talk to. I have nothing meaningful going on. I just exist between pain pills really but I keep going out there pretending to have a real life. There is so much discrimination I know I have not been on a foggy island I just have not been a prisoner like this chained to this invisible ball and chain called loss of independence. Just when I think I am all settled in then something else happens and I just sob myself half to death. I worry I won't stop crying but then I do. I know I can't keep up crying because it takes too much energy. I don't know if it is time to give up or not. I want to find something to do but perhaps it is too stressful and I need to relax with my health in mind. Why do I struggle to do so much I just want to have something meaningful to do with my days
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 ever. She has how about two more and of I do that. I say that it hurts and she says is it a working hurt. I am so stupid to not just recognize hurt is hurting is hurting LOL! I even said am I going to be feeling this later on and she said yes probably. And what did I think was going to be ok with that well I thought that I was going to be like a normal healthy person working out and that I was going to benefit from working hard and pushing the limits. Right now all I can think of is that I wish I could sit in a jacuzzi for a while and soak off the deep aches and pains and that I plan not to move anything more than necessary tomorrow except to stretch so I don't stiffen up like a tin man tomorrow. So much for my ambition. I want my old therapist back. I find it hard to say NO when the therapist tells me to do stuff. I trust them to know but my first clue is when I did say I had to stop and she said oh good let me know that because I don't know what you are feeling. But that was after she looked at my charted exercises and said I should be doing more than what was written down. I thought oh no maybe I won't get better unless I am doing more then. I would kick myself but that would require moving. So should I just continue down this path and see if I get stronger faster of course not in a million years not a chance will I repeat this experience and I feel like I have been dragged behind a truck so I don't care if I ever move again just let me sit with a blanket and rest with a hot beverage thank you very much. Just because one is capable of doing a thousand reps doesn't mean one should do them. She was absent the day they taught that and I am just plain stupid desperate to walk so lets do the most. AGH. I just learned that there is a difference between a stroke oriented pt and a regular pt because I felt like she was a personal trainer trying to get me to set a personal best rather than just progress through the next step like my old therapist does. I was so enthusiastic too just jumped right in and enjoyed that but not now I am paying for it now beyond what I thought I would. ok so maybe I am just a wimpy kid but I am on norco so I don't have a normal pain boundary when I am at therapy and I am not supposed to be in a work out either I am supposed to watch my blood pressure too and we didn't do any of that. that is why it was so much fun and like a normal gym lol hehehe. my narcotics are not helping my current pain level of 59 nor my stiffness and soreness. I wish I could soak in some Epsom salts but I can't sit in a tub. I am disappointed that I was so foolish and disappointed that I was trusting the olympic trainer here. I should have been tipped off when she said my therapist's plan was underachieving. What was with that? and why did I buy into that? like oh yeah if I rush this then I will be getting my balance back quicker. all I accomplished was to make it unlikely I am going to be moving much in the next couple of days. no practicing then at all much. I guess that the mentality might be to get me at the next level sooner but it isn't the way I am going to do this.
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 able to be on the computer and I have a thousand other blessings especially this cold pop which eases the impact of the mega diuretic side effect of dry parched mouth in the middle of the night. I don't do fizzy pop much and I admit that I actually squirreled this one away ok so I have a few more hidden for another middle of the night craving.
I will enjoy it when they open gifts I shopped for and I love surprise wrapped up things no matter what it is. I would love a rock if it was in a designer gift bagLoL but I always get some nice things. I was already given a very special MOM bracelet today and a pair of matching earrings which I may never take off because that is the most most precious thing is to be acknowledged for my role as a mother. In fact that is my entire identity no matter what else I have done. I just feel like such a burden and such a grouch sometimes that it is nice to know I am loved. They love me they really love me. sometimes I wonder why and how.
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 card to pull out and verify they overbooked and not me. Then I ask about the walker stuff and could they do it while I am in the office. The woman says to me "Do you know how many patients I have?" and I replied "Oh well maybe we can finish it up and mark it off your list and you don't have to worry about me anymore." A savvy colleague taught me to say that when confronted with the "I am so busy" nonsense. I don't know if it worked.
I was there because I am a swollen balloon still for months and I can't wear my shoes. I have a pair I bought in the next size up that I wear. I can wear a few sandals. So the doc tells me that it can't be my heart because the blood test says it it is unlikely so no referral to the cardiologist. He doesn't want to change any of my meds saying I could have another stroke and they are all the same anyway. Then he suggested stopping the Gaba! I have no sane coherent lady-like comment to make here on that. I insisted that I am so swollen and I need help and he went all scary on me and shook his finger in my face and said he would bet money that I was swollen before. I said well I am telling you now that I can't wear shoes and before I could. The doc insisted that he had no way of knowing that because he hadn't seen me before the stroke. I guess lying about wearing shoes to get meds for swelling is a thing? I said I did wear shoes and I sounded five years old. Then I requested to see a specialist if he couldn't help me and he got in my face--and I am siting in a wheelchair--and shook his finger in it and said YOU had the stroke and then he went down a list of things I didn't do to take care of myself which kinda sounded like a fire and brimstone speech if I ever heard one. I felt like crying and apologizing for having a stroke. Then I looked at my family member who came along assisting me and their nose was in the cell phone probably some game thing. That made my good sense return out of the fog and I said I had one last thing on my list and that is to see a pain specialist and he wrote me a rx for a narcotic instead. Guess that isn't on the swelling list? Then he had a brain storm and brought in a sample med he said would help me. It is a new med for Type II diabetes. I said adding it will help my swelling and he said patients lose weight on it all the time. I knew I was so deep in the twillight zone then because I was afraid to ask if it was water weight?
I called my insurance case manager and I said that I didn't get any referrals I wanted which was good for them but that I didn't want to continue with this doctor and I wanted to change just as soon as my walker stuff comes through. I said I want a doc that specializes in the care of stroke patients and I don't care where I have to go but I want real treatment. I am going to do some research on my own and see who I can find but I need to know who is on their list. It is just so hard when I am so miserable. I just can't have another person shaking a finger in my face and blaming me for the stroke regardless if I ordered it with fries or not, I doubt myself and think perhaps I am overreacting now. Is he just trying to help me prevent another stroke? I really don't care. All I know is that he doesn't make me feel cared for and if he ruffled feathers then I don't need to ask why and analyze it. It feels all wrong so it is. It isn't like I don't like hearing to eat more veggies and exercise more, nope it is more deeper than that. The guy always was wrong for me but I didn't want to start over doc hunting.
I go to the neuro next week. I don't like this new world of doc offices and all this isn't what I expected. I thought there would be kindness and competence and cellos playing over loud speakers. What planet was I on?
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 in the mall and at one point I walked to the counter and made a purchase just me and my cane. NO hanging on someone's arm or being pushed in the wheelchair. I even wore my purse. It was all I imagined it would be. Oh I bought some lotion at the counter. It felt like old times. And to be out at Christmas time with all the decorations and all.
It was wonderful and I am so happy that I am doing it now but it is also bittersweet because there were constant reminders that I am not the same and never will be perhaps and that is so hard to know while at the same time I am so happy that I am recovered to this point now which is so not where I am content to be when I just want to be normal again but it so nice to be walking that is a thrill. The experience was surreal. At one point the noise was getting to me with babies crying and the music seemed to be more than one kind, country and then christmas carols at the same time, and the place seemed too loud too chaotic to look at too. I thought I may have made a mistake and should go home. But I sat with a coffee and perhaps that caffeine helped me focus because then I was up walking and going into stores. I was feeling the vestibular stuff as usual but the cane helped me with the dizzy feelings so I didn't fall over or lose balance. I am ok as long as I can hold something or someone. The cane made it better than holding onto a person who is moving also. the cane was rooted to the floor.
I soon became accustomed to the sounds or maybe just got away from sounds of screaming and conflicting music but there were visual horrors to deal with. People seem to move at lightening speed. I know that I move slow but this is different because I just can't tell how fast they are going so when they pass me it feels so fast and I stop because it feels like they are going to knock me over. In fact they do seem to come too close but I can't be sure it that is because they really do or if I am wigging out about it. I can't walk with someone whizzing past so I always stop. Note to self: give extra room to people using canes or walkers instead of impatiently squeezing by them.
I also had a hard time with the decorations that I love like the blinking lights, tall trees that I want to look up at but that sends me off in a dizzy spell. the big wide space of the mall makes it hard for me to walk. LOL. Isn't that weirdest thing but it is true. I walk better in my small space than in a big space like a parking lot or the inside mall. I did better when I got inside a store. When there is so much to look at I get all spinning. Sometimes I am walking and then I just suddenly feel lost and floating like I need to hold onto something. It was good to have my family close by and I can't imagine going out alone but I want to. I was thrilled when they left for a while and I walked into a store on my own. I tried not to walk close to any display I may destroy lol and I felt so daring to be off on my solo mall mission. And then they were calling my cell phone wondering where I had gone! OMG it felt great to be someplace alone and no one knew where I was for about 15 minutes LOL! I had escaped!!!! Yep mission accomplished I bought lotions for gifts! I got one for me as usual too.
Then we stopped and got these milk teas with boba in them. Boba is my new passion. I know they are not on my list of 10 things to eat but I do it anyway occasionally. This was the day for it. I sat in a real chair with my own shopping bag I got on my own two walking feet and had boba.
I didn't listen when they told me not to over do it. I mean how do I stop having so much fun? I walked the whole way back when I should have listened and had the car pulled around but I just loved walking so much. I wanted to see more stores and it was a tiny mall but not to my hibernating muscles. I am still suffering stiff and sore muscles. I am using icyhot and stretches and of course pain meds but I can't walk much now. I am sitting here in my new christmas pajamas so who am I to complain. I had a wonderful time and I may do it again but hopefully with the sense to not walk so far so long.
That was a fun time and I got what I wanted for Christmas which was to walk in the mall, carrying my own purse and doing some shopping.
It was heaven.
But it was also the flip side of that because I know this isn't like ok I am fully recovered back to normal and this is seeping into daily life acceptance. It is sometimes embarrassing too because this vulnerable incapable self isn't how I usually roll. But I underestimate how I am viewed by others sometimes. I feel kind of ashamed and humiliated that I am like this ok even if it is irrational I do feel like I have failed something by becoming less than.... so anyway on one occasion my neighbor stopped and congratulated me on walking now and expressed admiration that I was up and getting out. On another occasion, a class cohort I hadn't seen much stopped and expressed admiration that I was still attending school. This helped me feel my progress as real and that I am really coming along. On the flip side--for me there always is one==I feel singled out noticed because I am the one that maybe isn't going to finish school now and the one with the sad happenings. I am so glad they notice and care and that means so much to me but I don't want this kind of attention. I wanted to be admired for more than stroke recovery LOL. I am greedy vain type here ok! I just can't describe how weird it feels to have people congratulating me on walking. walking. I took it for granted then it was the driving force of my life just to be able to take a step and not fall. But to walk for a substantial distance seemed impossible then and yet this accomplishment is so huge and it is for me but on the other hand it isn't sounding like it is much. Like they are congratulating me on still breathing. I guess they could do that too. This just all feels surreal.
But I will take my moment in that mall. Miss America never had such a lovely walk down as I did that day in the mall walking into the store all on my own. Just being out is an accomplishment in my current state. I seem to find fun at a lower threshold these days because a mall trip with my favorite boba or coffee is pure heaven now. I have this pain thing so I need to be comfy without constricting clothing. I go out in comfy clothes only. I get irritable when I am out sometimes and I don't like that part or that i have that in me. My family can irritate me beyond belief and they are often not kind when they deal with me but i know I can be miserable to be around until the pill kicks in sometimes. I still want to have fun though. They know it passes and then we have fun again but I often feel that I ruin it all the time and so who wants to be around that. Life gets simple and then complicated at the same time. But hey walking here. walking. walking walking. walking in these slipper-like shoes LOL!
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). Ok this isn't very far but for me it is a walk through the mojave in summer. I couldn't do that before. That is a phrase I live to say! I have just little victories like hey ma no hands at the bathroom sink, which makes fixing hair at a whole new level.
I am not waiting til the new year rings in to make the resolutions I need to make. I am struggling with many bad habits that want to return but I am focusing on the new life I have now and I want to make it the best I can because I know now that this ticket is time limited isn't it. I resolve to be kindest to myself most of all and not be stressed out worrying if I inconvenience anyone because I had my time of giving and giving and what does it hurt to be selfish right now when I need it right? No one else around me knows what it is like to be a prisoner in a body that can't just go and do whenever when I want to get out of the house so I don't have sympathy for them when they protest that I am too spontaneous. Who says I am the one needing to change? Perhaps an unplanned trip on a minute's notice is good for their soul as well as mine so I resolve to keep bugging everyone to take me out for a diet soda and a walk. I also resolve to keep speaking up when I want this or that from the doc or the therapist or anyone in the medical community because I believe I too have expertise in this even if it is a little bit and I need my voice to be heard because just that is a healing element in my life. I resolve to cry when I need to and laugh as much as I can because a cry washes it away and a laugh keeps it away. I also resolve to try and not keep worrying about what is going to get better or not and just enjoy this moment in time as much as possible because less stress is the best medicine for me anyhow.
I resolve to do the things I always wanted and was always too timid to do like this new haircut that is the shortest haircut I have ever had in my life sorta twenties style kind I saw on a show and decided to get it. I remind myself of my grandma who put those clips in at night to get a wave in LOL only I haven't got the wave clips yet. Plus I refuse to go grey just yet so I did a dramatic color change which I absolutely love. I also kinda like how no one recognizes me at first LOL and this new controlled change in my life is just what my soul needed and hopefully a good make over for the holidays will be just what my new years resolution list needs to get it going. I need some confidence back because I am literally knocked off my feet just now and I really don't need to be just like I used to be, i need to be better. I need to be a better person, I resolve to try and be a better person and with all that goes with that because I want to be more patient, more adventurous and confident, more intuitive and insightful, more able to negotiate, and more content in each moment no matter what is happening. I want to chanel John Luke Picard just with some great hair though. I want to be calm and say things like "make it so" in my life LOL. I resolve to at least try.
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 was so happy if only for a little while. My leg pain got to me finally and my lightheadedness returns when I stand too long and the store gets the vertigo going but none of it is as bad as it used to be. Who says shopping isn't good therapy! So I got the cart and let the adventure begin! I actually knocked over the cart my daughter was pushing! She was looking at something and left the cart in front of me so I was facing it sideways. I decided to back up and yes I did hit the forward and I knocked it right over! There was a crash and me yelling OH NO! Security came and found my daughter picking up the stuff and both of us in hysterical laughter. Nothing was broken not even my pride. So then we continued on. In fact we spent so much time looking at all the stuff that the cart died in an aisle and that was the signal I needed to go home!
I am done with my christmas shopping though and that feels really great but also very sad because I want to go out more and be in the midst of the craziness. But this way I will be sitting with a hot coffee watching the shoppers.
I am trying to not take this pain med but even when I am out enjoying myself and forget about the pills then the pain comes hard. I don't like living like this and I feel like an addict. I can't walk in the pain so my PT said that managing the pain is the first priority. So I keep taking this high dose that works well but I am a zombi. One that can still shop though. I feel normal on the pills now too in a strange sort of way like I am just getting used to this vertigo and fogged existence. So in one way I can get around better now and this is great but I want to get back to work and I can't do that on these pills. I pray that the pain stuff goes away.
Ok enough whine whine. I seriously have some killer sob sessions and my drugged dreams are vivid and disturbing sometimes with people I have lost. Funny how happy holidays brings out the deepest sadness sometimes. So I have to do some serious distractions so I don't go down looneytooney lane and indulge in it any more than necessary and yes I think some is necessary.
So in addition to this I got "saloned" and so I had to take this shorter than I ever have had in my life twenties kinda feel haircut and color out in the real world. I didn't spend all that money to sit on my couch having a pityparty alone. I am making that things to do cheap or free list to go out and enjoy the lights and sounds of the holidays. We go driving and looking at the neighborhood lights so thank you to all neighbors with lots of beautiful lights and neighborhoods who put on a show. I am looking forward to not driving this year (ok that is a lie too but maybe I will enjoy sitting in the back seat and relaxing) and having a travel mug of coffee or cocoa and some popcorn. Ok the popcorn will be a new thing this year I have decided since I will be in the back seat. I need to find kettle corn so I am going to go to farmers markets this month too. I would like to go to the swap meet and walk around. I just want to go out and walk and walk and walk.
I love walking so much. Thank you to everyone who encouraged me that first month or so when I was so scared that I would never balance enough to walk. Here I am walking all over the place now! I just hope that the ability to really walk without assistance will return. My PT asked me what my goal is and I said I want to run a race again. Even if I go to some special olympic thing. I want to put on a bright pretty pair of athletic shoes and run down the lane. I never knew that it could be this hard oh how I took it all for granted. But for now I just gotta train in the grocery aisles LOL!
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 with those who truly love me and why would I bother with anyone else? I am less stressed out these days as my life slims down to what I enjoy and what is meaningful today.
I am going off shopping because eof the kids asked if I was up to going out shopping. That is like asking me if I feel like breathing today LOL! I love to go out to any place there are people to watch and talk to and I don't care if I buy anything or not but I just might find something for someone for christmas out in the sales today. We'll see. I have done the early morning stand in line before and that is how I got my big TV for a steal deal LOL and I like telling the story of it because it was a really fun time being in line and really having time to get to know the others in line and talking and sharing and it was a positive experience. It was fun. One of my cherished memories of an adventure. Now I don't want to do that stuff though because I get so cold and tired. When did I start acting so old LOL!
I also never put out the christmas decorations so early and I always said why so early to it but now I just think that I better do it all while I feel good and so I am not complaining if the kids wanted to get it all set up for me now.
What a cheering a little string of lights can bring!!
I am celebrating today that i can walk better each day even though I wake up with pain and deal with it every day. In the midst of the pain I am still looking for fun every day. Today I am going off to a salon too. They have their work cut out for them LOL!
I feel loved and beautiful when the family is here all around me.
Last night I went to a conference at a hotel by the sea. I enjoyed the beautiful sunset over the ocean. I left the wheelchair in the corner and sat in a real comfy padded seat verry grateful for a soft seat. At the end of it there was a little reception with wine bar. I waited until everyone else went through the little buffet line so I could walk through with some help. I did it!! I managed not to fall on a table full of food and to hold a little plate and hang on for dear life on an arm. I felt normal and yet I have never felt so not normal. I look back on it and I am so amazed that I could do it and that I can say hey I did walk and talk like I never thought I would again. Then there is a part of me so disappointed in this life and so embarrassed and so in agony to the core of my soul that I am not who I was and who I want to be. I came home celebrating but then as I lay in bed thinking I was overcome with the awareness of embarrassment and shame even (irrational) and what was I doing anyway certainly not proving anything. But then again I was proving everything. And I was the only person there in a chair and not even someone with a cane was there. So good then I was representing. There I was on a lift bus in front of the place. it didn't matter that I had to take pain pills to get through the night as I am on them around the clock anyway and I am quite the functioning high spirit these days.
I just kept remembering those who posted on here to remember that I am still me inside of this hot mess. And my kind access representative told me to stop apologizing for needing this or that and to accept that is what it is all there for. Ok so I view that curb side bus as my crystal carriage to the ball as it gets me to where I am going all the time. Only I feel like I am going to turn into a pumpkin any minute. I am already making trouble by eating on the bus because my companion last night bought some gelato and had to bring it on LOL so there we were eating on the way home breaking the rules but it was ok with the driver. We were the only ones on and had a direct ride home so it was ok. I was so happy last night and I never thought I would go someplace again and have some wine and cheese and sit by a fire looking out at the ocean and discuss things just to do it. I even did sip some wine even on my meds so I was probably bad and I don't even drink but I just wanted to do it. Ok so then I wanted to taste red and then I wanted the white so there were these glasses next to me. My program director was there and he came over and asked who was driving home because there were all these glasses of wine there! LOL which gives a new perspective to my wobbly walk LOL. But it was so fun to be there.
It was also a weird thing to be in rooms with patterned wall paper that constantly looked like it was moving. The hotel is 100 year old thing so the elevator was tiny and had beautiful woodwork. I stood in it and hung on to the railing which was another first. I am really getting around aren't I ? We took pictures with the cell phone which still cracks me up. I would have loved having all this as a teenager. I love it now. And no one asked me anything so I didn't have to say anything about what is wrong with me. I didn't volunteer any info. I was a take it or leave it attituder last night.
I had hoped that by this time it would have all disappeared but then again it feels like a miracle that I was able to get out and do what I did last night. It was all free too so that is why I enjoyed it all the more! I got a scholarship to go to it before I had a stroke and I almost thought I would miss it all. Ok so I did feel like Cinderella on borrowed time last night. And sure enough I am sitting here in my nightgown barely making it on the pain meds and spent the morning in tears and frustration that I am so sore and stiff along with that weird brain nerve pain thingy that never ends. I am reminded that I am not the person who could float down hallways and stairs talking with people easily and I can't even wear shoes yet (what is the deal with the swelling) and I have an overwhelming feeling I don't belong any where. But it didn't matter and I just bulldozed through it because I wanted to be there.
I don't recognize myself in the mirror much and it hurts inside and out all the time but I just want to be getting out places. One of the funnies things of all of this is that I was on the younger side in that room at the conference. I remembered to keep thinking that all of the people in the room will be having some health crisis at some point and I was just the one where it shows now. I just really appreciate what you all have told me and shared here. It is helping. thank you. I am just going to sit with this celebration and look only at the positives because it was a blessing just to be there. I almost missed it. I have to let the negative just go and be in serenity about it all today. I am thankful for the adventure and I hope I can find another one soon,
I was in a store waiting to pick up at the pharmacy and a woman went passed me with her cart and said to her companion that she didn't want to run into the wheelchair person. That was me sitting there holding my goods. I was shocked to hear that because I forget that the world sees the wheelchair before they see me, if they ever see me. So many people look to the person pushing me to answer for me or just to speak. Some people don't look down at me in the wheelchair. In visible. Then when I am not I am the wheelchair person. I hate that name. Who calls someone that?? I was silent but inside I was screaming at her and then later I said to myself I wish I had said something to her like I am not a wheelchair person I am a woman just simply a woman who just needs this chair because I can't walk very good. I am not married to this chair. I hate this chair but most days I am grateful I have it to get around in it. I am not getting the motor one but I am getting a walker for outside I hope. My Pt finally said I could get it after I have been using one in therapy. I can't get too far because I tire out so easily but it feels wonderful to walk around even if it is with a walker. Anyhow the nifty red one looks better than the two wheel they gave me in the hospital. it saves me though because when the pain gets so bad then the vertigo gets going and I need to rely on it. i am so embarrassed so it is bittersweet to be out in public in my little area and run into people. I am feeling weird too kinda jealous that they go on in their real lives in real pretty shoes, I agonize for a minute over the shoes and that they are just where they were successful and I am here in noman'sland. Am I really seeing this and smiling and answering that I am doing fine? OMG did I say fine again? Or then there is the just awkward looking that says yes this is me so don't pretend you don't recognize me and I won't speak so we don't have to pretend something. I am out in a drugged state so it is all fine. Somewhere in here I am suffering so badly and no one hears my screaming because I just readjust my scarf and smile and then I go show off by standing up and pushing this wheelchair with my sloppy shuffle but it feels too good to stand up tall again. Life is much better standing tall I have decided. I want my new red walker they say I probably won't get the insurance to pay for but I am going to see if I can get one anyway. I am thrilled that I am here at the new stage of talking about how to walk better and properly and for longer distances. I thought I would never get here and now here I am. I sometimes wobble in on someone's arm but I usually need some real support.
The things people say that hurt me and I don't think they even think twice about it, And then the stares and sometimes the smiles. I especially appreciate it when someone smiles my way as I am walking. I hate that attention but that feels like a cheering section. Then there are those that wave. I love that and I swear I want to go give that person a hug.
It is lonely down here in the wheelchair where people don't look and I feel invisible and forgotten. I don't whine too much now that life has passed me by and I sit here like this because now I am feeling that I really did cheat death and I may not even have been given this time at all. That is hitting me hard now and part of it is fear now of another stroke as time goes by.Or maybe I am just grateful that i have this time and i look for the gold buried in this time like I get to menu plan for real now and we do cook together when there is time and there is more time now and I am here just so glad to be here looking at old pictures and not forgetting my life long time ago. Then i clean up and go do homework. My tie to the present.
Ok so now I hope to be WALKER WOMAN soon (sigh).
I don't know if I am optimistic by nature but I tend to hope for the best perhaps out of denial that things will get worse. Maybe it is just as my grandmother said and it is having the Irish in me that does the trick. Whatever it is, I seem to like to stay in the bright sunshine of hope but there are days I am in a mood as dark as night. I blame it on the pain that follows me around like a silent shadow waiting to get me. I sometimes wins and I can't outrun it with the timing of the meds. I finally have a bit of a combo that gives me some good relief but I am never a day without my shadow. I am getting accustomed to it now and i feel that happening. When someone asks my pain level I get really irritated all at once realizing they need some measure of pain and then just so aggravated that I am asked a level of pain in the first place. I mean life used to be without pain. NO pain. pain free. There was no language of pain and not a scale for it. So on my journey to get back to normal I want to be painless and so I want to be asked whether or not I am experiencing pain and not what level I am experiencing it. Who ever decided that a certain pain level is acceptable. I notice this when I give a number in PT and they somehow celebrate this when it isn't a 10. So that is an irritating thing and not something I am thankful for so I am off topic as usual.
I am now suddenly very aware that each moment is not to be taken for granted and yet it is the normal everyday things that I am so grateful for especially after being in the hospital hotel. (I say this in jest because someone told me that I was not going to the inpatient PT because that would be like staying at the hotel version. LOL as if one would call and request to be awakened in the morning with a blood draw please). I am most thankful for showers and the nifty shower chair that I wish I had had years ago because it is most handy for wash in hair coloring days with a handy magazine to read. In fact I know that I am not the only one using it in my household just for a leisurely sit in a steamy shower. I am so thankful for my family and all they do for me even though it challenges family dynamics in an unbelievable way. I am thankful for those I meet in the rehab waiting room because they share information or they just share inspiration by being there and smiling at me. I am thankful for the pharmacy tech that always knows me now and gets my goods, helps me manage snags, and makes me feel good when I come in. I am so thankful for everyone who ask if I am walking yet and lets me show off my small progress as if it is tremendous. To me it is. I am grateful for being able to stay in class and to be treated like everyone else. I am thankful of course that I see and read and all that my brain and body continue to do without explanation or reason. I am grateful to be alive although it irritates me when others point that out when I complain of an inconvenience. In my previous life who would think of saying to me that at least I am still alive when something is wrong with this or that. What an idiotic thing to think. I guess I may reply that even beyond the grave this or that will still continue to irritate me. True story when I told a nurse that I was still in so much pain it was intolerable and she replied that at least I wasn't paralyzed. I really did comment that I considered amputation an option if they couldn't get me more pain relief but I chose to eliminate that doc office instead. I wonder if she tells the paralyzed patients at least they aren't in pain. I was beyond furious in my postsensepoststroke fog. I no longer question that such medical folk walk the halls employed. Now I just try and dodge them. I am soo thankful for compassionate and competent medical professionals.
I am thankful for little daily things like those plastic cups with lids and straws I call sippy cups because they make needing a straw less stigmatizing and spill less with my new gracelessness sometimes. I am grateful for those cloth grocery bags that make excellent carryalls on the wheelchair and walker without paying for special ones. I am grateful for all tips that make this life easier. I am waiting tor a magazine devoted to such things and other health topics and not just the one in the waiting room with high priced gadgets although that is a nice one too. I am going to look and see if there is any attention given to stroke needs in magazines for some tips. I already use my voice activated phone thing. I didn't get any OT so I just grab at what is out there. I don't know if OT is worth fussing about but I see them doing crafts so I am jealous. I am so thankful for days I get out of the house and enjoy the weather and sights and smells of the world out there that goes on no matter what. I am so grateful that I am involved anyway I can which makes me then grateful for all the new face creams and make up out on the market so I can put my best face forward with the magic of make up. I am now so pale from not being outdoors nearly enough.
I am thankful for the love and caring I now see in real time because of this stroke. For all the irritating things there is the time when love shines through even from strangers who want to be helpful and who notice things.I am thankful for those who can never understand what I am going through so they just relate to me as if I am the old me anyway and I appreciate those who get it even more than I do and can help me navigate this trip.
I am grateful for prescription antifungal shampoo which is an explanation and an end to the diagnosis of stress scratching. I am so thankful it smells so good and isn't so bad with a nice leave in conditioner. very thankful for that. I am grateful for cancer free but what is this you cut out of my scalp? I am grateful for nurses that sing to me.
I am so grateful to have family to eat a meal with and if I needed to get around people I would do it because it is with people we find something to lean against or to push against in this journey. I am grateful for my family recipes which I find it irritating that I may not be doing the cooking this time or ever but my kids will do it. I won't be traveling since being in any public transportation is way too busy for me and driving in a car continues to make me ill so I am staying home with only short drives. I am going to decorate asap for christmas because I love lights. I am grateful for the neighbors who also decorate and share this love of lights no matter what winter holiday they celebrate. I have out my orange lights from halloween saying they are just fall color lights now LOL. I am so grateful for help getting this done too. For all the things I used to do and would miss in my life if someone wasn't helping me.
I am grateful for the tinest things now like these new hair ties that are elastic ribbon that help me to the new phone things that are on this phone that are so wonderful and who would guess when I was a teen that the world would be so high tech and gadget happy. I have the latest phone then it is obsolete so fast. And all kinds of things to look at email on now. I am grateful for so many material things that I am blessed to have that did not exist until after I had kids. I am grateful I know that world. I try hard to say stuff about it but it falls on ears that can't imagine like me wondering about the milkman experience. I think that is a shame that fresh milk is not available like that. We have water delivered now. Anyway I am grateful to appreciate the changes and to have the benefits of microwaves and I think about it now because I had to replace stuff and I can't imagine not having it.
I am grateful just to still be home and going on no matter that it is hard and even if I do get so sick of it that I say I wish for death tonight. In the morning I am always happy to see the light and make the coffee. I am grateful for the times during the day that I stop and remember some happy memory that makes me smile or cry. I do alot of memory time. I am grateful I have them still there to go over and touch and roam through. I spend time in the past during the day now when I was busy in the present before. I am grateful for the time and chance to spend time and those little ones run around again as if it was real. I guess maybe that is a stroke thing maybe with this intense emotion and reminiscence. My brain delivers some good things.
My kids say they never thought I would be on so many drugs and be like this strange happy creature saying everything is beautiful and everyone is wonderful on these heavy meds they have me on.I fussed but when it takes the pain and the nerve stuff like I have then I am so grateful to live well any way it takes. I am grateful for cheating some chocolate even when I am on insulin and thank the suppliers of this sneaky wonderful stuff. I hate what sugarfree stuff does to my stomach. I will sneak a piece of pumpkin pie of course because life is meaningless without it that is how much I love pumpkin pie. I could just take a fork and eat a whole one and forget the real meal. Ok not really I would like the rest of the real meal too. I can't give up pumpkin pie the real thing. I get at a bakery so I don't want to cook one either LOL.
I have a list of things I am so grateful for from little to big things and they go on and on and when I am done thinking about it then I see that I do have a list of blessings after all even though most of the time I am in such a heap of loss. What do I fuss over really or think of as lost? Do I need those things in my daily life to be happy really? Are the things that I consider ME or part of who I see as a worthy me even that important? Do I want to finish dreams or start new ones and is the process just as good as a product? Am I only changed now and could I even say I am better in some ways than before? I never consider that one for real but what if?
One goal I have this year is one I always say but then I don't because I get busy but this year I am going to do some charity work for real in person and not just giving money but getting involved in person. I have not found a place yet but I am going to do something.I am going to google it. My days are measured by time in pain and time relieved of pain and that has changed who I am in so many ways. Find a level system of that. On every emotional continuum I am roaming all day because of pain. I see days and things differently now. I want to give something back. I call it my Scrooge indulgence as I realize I am so preoccupied with myself all the time and there are others out there with yes something worse.
yes this is the holiday time I almost missed and I am optimistic I am going to be here for them so I want to make the most of them but I am so limited in my new vestibularly challenged world from this prison of my body. I am grateful for my memories that take me back to happier times and places I have gone and I may not have a big impressive vault of things or places but they are mine and as the little prince would say that it is mine makes it beautiful and that is enough. I am thankful for what life I have lived even for the things I get to regret. I am thankful for the moments and memories I get to make only I wish I had more control over them and could design some nice ones but as usual I just get to take the moments as they come and there they are. I am grateful to get to be in the middle of carrying on some traditions.
I need to put up some list of these personal things I am grateful for because honestly when someone starts with the grateful thing I am irritated. Not that I am not grateful as you can see but it just is some gut reaction that it is going to be fake and cliche. I want to say I am thankful for a good haircut when everyone else is going mushy and saying thankful for this person or that and I am thankful for the deep important things of course but I get irritated that some of the things that irritate me in real life like those little stressors that really get to me, you know the things like running out of ink in the printer on the last page, well I am thankful for when those things don't happen so I sound shallow here don't I / LOL! I mean who isn't grateful for a loved one but it is those little things that ruin me. Like now when I can't just go out when I want to and so thank god for online shopping. Maybe a new nail polish color isn't going to change my world or give me my life back but hey I take a joy where I can so I am grateful for when someone takes me out and lets me browse around for some little thing like that. Especially now I am dependent. I am so angry sometimes about what I can't do or what is lost because those things were like some rights and entitlements as a person I took for granted. In the hospital I said I don't think I can live handicapped and the nurse pointed out that others are born that way and others live that way. I said it because I am scared of having to learn how to do it and how to give up the things that not being disabled are just there constantly. Now 6 months into this I am so disappointed that I am not just back to before but I am adjusting just like others said I would. I continue to push it though but part of me is not so horrified to be in a wheelchair. As long as I can get on with some of the normal things. That is what is important.
I am grateful for the improvements in my condition and little things that I can do for myself or others now. I can walk behind my wheelchair now and I can walk holding someone's arm without wobbling over. I can walk around the house and carry some small things so I am so grateful to not have to ask for things now. These things sort of happened overnight just look I can do this now why didn't I try it sooner feeling. I am not getting a walker yet because of spinning but I am getting stronger as long as pain is well managed. I want one of those nifty three wheeled walkers which look cooler than mine. I saw one with a plaid carryall bag attached and it looked as trendy as a walker can. I was told that it took a steady walk to graduate to that. My therapist wants to set some new goals this week. I said I still have the old ones which are walk normal and drive. I want to be back where I was the day before the stroke and I have not let that go and I need to stop thinking that this is a flu that will disappear and heal without a trace. But that is my real goal. I want to eliminate all traces all of it from the pain to the grotesque walk and all the limitations and the need for these medications. I will need to keep the blood pressure meds and aren't they a sorted mess of drugs anyway. But my goals are not so intense as before when I had so much hope in the beginning or was it denial that it would last. Hope has a way of slipping away fading slowly just subtle changes hardly noticed then it is turning into acceptance and ajdustance, which isn't a word but should be, and other postitively spun words that represent no longer hoping really and just being in reality in the moment whatever it is and not caring for the moment which can be a comfortable place or maybe a horrible place depending on my mood. Is it smarter to be in one place or another well the right answer is the one that fits or works and with me that is constantly changing. Hope is a kaleidoscope. I change my mind what is the most important thing. Some days I am content to not have that life now and to just be pain free for a while. Other days I study for exams or write the paper and go to class sitting in there with the young and demanding some more time in the land of the living. How did I get this new part of myself integrated into the old one already?
We went to a pumpkin patch where I had sat my infants surrounded by pumpkins and took a picture with a camera that used film and the kids don't even know what film is lol. And later wheelbarrow photos with them crammed in with pumpkins. We go every year and buy some food in the shop there like peanut brittle and apple butter that is to die for. forget my list of 10 allowed ingredients. And that smell of hay that I just love but doesn't love me and I suffer later for despite antihistamines but that country air this city gal loves. And so this year there I was in a wheelchair holding the pumpkins. I didn't want the photos and then I did. It is here this day and so document the story even if I want someone to edit this out for real. I don't ever carve my pumpkin because I like to just look at it as long as it lasts and I will add some feathers or a little winding sparkle cord around it to decorate it up so it can last and I put it on a festive tray as a center piece to look at. Then I like to carve other ones and put candles in and smell that pumpkin burning smell. Yummy. I used to roast the seeds. and then make hot cocoa. We always go out on halloween since we don't get kids around us so we go oiut and see them someplace and go to some party. We are keeping all traditions going which is nice to see the kids dragging me out of this house. Thank you. I even got out and walked my wheelchair a bit. I am now holding my son's arm and walking into restaurants! I am snail slow but who cares it is so good to be on my feet even if I can only really feel one of them. Then I walked into class the other night and I got smiles but they just treated me like I always walked on my son's arm into class and it was a sight they saw all the time nothing unusual. In fact the professor got down to business giving me a deadline so I was just me there doing me things as usual. But I was skipping in my heart! Oh how good to be standing. The only problem is that I get dizzy and lightheaded standing up and walking is better but it still happens. I am still not going to be dancing but in my heart I am every time I get out of that chair and take those steps even though they are not many. I am not using the walker either just my son's arm. I joked and said that next time we could go in someplace with a bunny hop line up and no one would guess I couldn't walk right lol! So we tried it already but just up the path to the door. the neighbors already know we are unusual. lol. I have this exercise list to turn into the PT so it has these leaning and balancing things and stuff like that. I can't take standing and they say it is circulation so I am getting more tests for cardio stuff.
So on my birthday went to a casino and buffet. I didn't like the lights and noise and that was completely overwhelming to me. I shut my eyes as we passed through it to the buffet which was darker and quieter. Really nice. So I was wheeled up to the salad bar to get my food and sat in a real chair and I was in heaven. The they started bringing me plates with a little bit of this and that to taste. LOL they kept bringing me the plates until I had a bunch of them with little spoonfuls on them. I hate wasting any food so I was tasting and then passing them around for others to taste and it was all so wonderful. Diet forgotten and I felt just like a professional food taster getting a bite of this and then that. My son said he never saw so many plates before and neither did I. I didn't mind though because it was all really good food and I never sampled an entire buffet before LOL! The little dollups of food cracked me up. It looked funny to have all these little blobs of food to taste. They were taking small spoonfuls and asking for small portions and I took a picture of one plate with them. And then I cheated and had a bite of creme brulee and a few other forbidden creamy things along with a sugar free assorted. I certainly over did as one does in a buffet which I usually don't feel I eat my money's worth but this time I did feel like I did because I certainly sampled everything! One can do that at a buffet like that where they whisk away plates making room for more and no one is able to keep track and food plates are coming and going on the table. I had so much fun and while eating is always nice to do well this was especially fun and funny. I got a free $5 to gamble and I looked for the old timey slot looking thing and when I won $20 I cashed out. I figured I was a big winner too! I took the money and ran.LOL. I am not a gambler and prefer to throw my money away on things I can use or wear.
And by the way I no longer stress about the whole blood sugar testing and insulin and the table because I refuse to do that in a nasty bathroom no matter how nice and shiny it is and so I just do it at the table as discretely as I can. I have the pens now so it isn't like pulling out a syringe like I used to so I say hey isn't everyone checking cell phones constantly so maybe no one will notice when I do a quick shot. I layer shirts so I have a lighter shirt under so it affords some modesty. I have learned to take the insulin when the food is at the table instead of doing it in the car before dinner because one slow delivery and I was feeling it so now I just do what is safest and do the insulin when the food is in sight. I had to ask them to bring an appetizer asap and they apologized for being slow yadayada but anyway I dont worry about offending others that way.
We drove through beautiful mountains and went to a lake that was a perfect picture with reflecting pines. It was so pretty and peaceful. I can tolerate drives better now but winding roads are horrible. Me and the peppermint handkerchief made it there though. And it was worth it to sit there by the lake in the car. The smell of the pine trees and just the fresh air. And at the Indian reservation my daughter and I bought silver handcrafted rings with hearts on them. We were told that the Navajo tribe made them and there was a card that came with them with the name of the craftsman. My daughter bought a dream catcher (II already have one) in a mint green which matches her decor. It was such a peaceful time that renewed my spirit and even called out my spirit which was hiding itself and beginning to sour. I can't be in nature long without feeling the presence of God which is my higher power and religious orientation. So much better than church for me to go to the mountains and see the trees and how wonderful and beautiful the earth is and that all around us there is life even little squirrels and the birds we hear and take for granted. For me getting out and traveling to something other than a doctor appointment or to class was the best medicine ever. Soul medicine. I miss my days past of going to the lake on a speedboat and swimming for hours, then fishing and BBQ and then going into the lakehouse for a nice steamy shower (I am not a camping girl by any means). LOL I no longer am attached to the owner of that house but I do think on those happy memories there of being so close to nature. And to have control of my body to do all those things. In the following years I focused on my education and career and my kids were graduating and doing things so life went in another direction as it does. And now I feel that I am slowed down again and that in a way the opportunity to find peace is here again. I look at this silver ring and it is my talisman of reminding me of the peace of the mountains from whence it came. And my daughter who is my caregiver now and she has a different one but same feeling comes over me when I see hers and that peaceful memory of our day of such peace. It was such a nice weekend trip and so nice to be away from home which had been closing in on me.
It is really hard to explain what my visual world is like and I just explain that sometimes it is a synesthesia thing going on with my physical sensations to visual patterns black and white square tiles on a floor or patterns on ceilings or that I am having my eyes jump around so things are blurring out and fuzzy and moving about as I am trying to walk. It is sometimes like swimming through seaweed. Ok so while in a bread shop I walked up to the counter to pay up and I was on my son's arm and the person at the register said "next in line" three times although there was only one line and I was walking up and it was as if saying that would make me move faster so I said "It is still me" good naturedlike with a peaceful smile because who isn't thrilled to death to get homemade bread even if it takes forever to pay for it. So we still giggle on this one and if you saw a movie where the actress says "it isn't me" with Kristin Wigg then you can see why this is hilarious to us or then again maybe had to be there. But it was another first steps moment for me and even if there wasn't someone with a finish line flag at the end there was some fresh bread instead which is better isn't it. So I had my son's arm instead of a walker this weekend which is an interesting thing that I always need to be touching something to let me know where I am in the world. I could physically walk without leaning on anything but I have the brain part that needs to figure out where I am. I don't understand that at all but it works to walk like that. I can't walk when I am not touching something and someone holds the belt. I joked and said that the best way for me is to do a bunnyhop line up to a destination which works because I touch the shoulder ahead of me and someone holds my gait belt. We have done this going to the path home where we can be oddballs at home lol. I don't know if we will do it out but if you see someone doing this then it is me. I am slowly walking now and it feels so liberating to be out of the chair but it is only for short periods because I get lightheaded so I do these exercises for it and hope to be able to stand more. It is freedom to stand straight. Life is at eye level standing straight. I have an unusual life experience with all of this going on and no one knows it just looking at me. Nystagmus stuff and blurry and weird sensations and the emotions are just as whacky with intense feelings of joy or sadness that feel physical in my chest like the heart thing is so true. More brain damage fall out they say but beauty is intensified and so is sad or scared or angry. some regulation probs getting it to chill sometimes. My world is interesting some times and other times difficult to navigate and sometimes overwhelming. I document these odd things which I then find out are typical but where is that stroke handbook that describes this new way of existence which is so strange so far no one suggests I read. It is like I just have this and they act like sure stroke leaves behind this and that strange sensation like my arm that is frozen not in movement but it feels like it was in a freezer over night. it feels like a frozen thing although I have never been frozen but this is what I describe it as and this is interesting in itself. Mostly the world tires me out and being out in public even for PT is an ordeal but a fun one. This takes energy to deal with.