scottm

Stroke Survivor - male
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Everything posted by scottm

  1. Good news indeed. It is nice to see your happy side shining.
  2. scottm

    Back to ER

    You have a referral to go to the ER from the docs staff. They can't even be bothered to staff adequately. You are obviously dealing with petulant children in adult bodies. Also, This has bothered me since I read it yesterday. Their position that your roomie has the right to sit in wet soiled diapers may be true but you also have a right to live in sanitary, non-offensive conditions. If that means they have to isolate her because she is a biohazard, they just have to eat the expense or fix the problem. The conditions you have described constitute a health hazard that I'd expect any public health dept to balk at. Just my $.02.
  3. I think a couple weeks to be honest. Depends on their cognitive recovery. I got my first visit about then, any sooner and I was still off in the cognitive weeds. Having my wife in the room helped me maintain focus.
  4. Same here Jay, thanks for being a friend. And Pam, I also would like to thank for listening and sharing. Together all of us are stronger than the sum of our parts.
  5. I hope you get a chance to see the Christmas lights. We all need those little joys that such an outing brings. Sounds silly doesn't it, to get excited over Christmas lights but I for one am looking forward to a trip down the road to the local Chic-Filet who puts on the biggest display in the area every year. Thousands of lights sync'd to carols.
  6. I remember moving in a tunnel until I came to a place where my body lay and making the decision to go back, my wife needed me to come back. To continue would just require me to let go. You're right, the sense of peace was very strong, it pushed everything else away. Near death experience or just brain cells giving a death cry as they became oxygen starved? I don't know but it was very powerful and real to me and became a piece of who I am now.
  7. It has been a thoughtful day today, mainly because the lab screwed up my INR so I'm stuck monitoring my blood pressure hourly to make sure I'm not bleeding internally. I could be mad at them I suppose but it wouldn't change anything...besides, my cardiologists PA will perform that task for me in her particularly savage way. LOL At Thanksgiving I was talking with my sons father-in-law. At one point when my daughter-in-law was explaining (she is a nurse practitioner) that all the doctors are amazed not just that I survived but that my deficits are not more severe. His observation was "you obviously survived for a reason, you have unfinished business". I am still pondering that... I've written about the first few days before but I'm just now coming to understand something about myself. When I first woke up in ICU and sort of looked around it was as if only now existed. When my wife was explaining what had happened I remember thinking "this is interesting". I remember that I had no past at that point and for most of a month after. Everything was now and I had a clean slate, no baggage. Now I can recall most of my life with some largish holes. The stroke seems to have acted as a crucible and remade me into something else, a better version of my old self I'd like to think. Relearning all the skills I mastered by the age of 2 was an interesting if difficult exercise. When you are in your fifties and need to be toilet trained again, you no longer feel any form of embarrassment about anything to do with your body. Is there any medical professional in my city who hasn't seen me naked? Getting a sponge bath from that hot nurse isn't really that exciting when you don't really have a grasp on your surroundings or yourself for that matter. Grieve in whatever way seems right to you, then put on your big boy pants. Your family had a stroke too and they need you. They can't be strong if you aren't. Wishing it weren't so won't make your brain all better. Embrace your new reality, it is different, frustrating, maddening and full wonder. Explore it, explore yourself and find your inner warrior who won't fold up because having a stroke sucks. Yes it does suck, but it is the hand you were dealt and only you can decide how to play it. I'm not sure why I felt the need to go into all that...but I do feel better for having done so for some reason. I'll chalk it up to an electrical storm inside my skull.
  8. Good news Jay, you've been knocking them out of the park.
  9. Good news indeed. You're rockin it Jay!
  10. Good report Jay, hopefully tomorrows will be even better. Scott
  11. It was very pleasant, we had the whole crew at the our sons house. Everyone was inquisitive about my brain injury but very cautious about asking, so I took the advice of my strokenet brethren and broached it myself in a casual way. Something to the effect of all I want is world peace, a pony and a trip to Tahiti. The Tahiti reference is to a show called Marvel - Agents of Shield. In the show the main protagonist died during a battle and was brought back and in the process they rewired his brain good as new but replaced the memories with a fictitious trip to Tahiti. They all got the joke and it opened the door for them to ask questions and my wife and I to dispel some common misconceptions. Our DiL's parents were probably the most inquisitive as they had not seen us since before all this happened. They had visions of me being wheel chair bound. Put that to rest by explaining I had spent months in one but my PT team kicked butt, twice a day, 5 days a week. Next in line was our sons best friend home on leave from Germany where he is an Army doctor. He is quite versed in brain injury. I asked him if he saw a difference in traumatic vs acquired brain injury. His simple answer was "once brain cells die it doesn't really matter anymore." He was all interested in my meds and had me do some of the tests the neuro had done. Then declared me fit to dine at the adults table. :lolu: Many thanks to everyone here who provided help when I called out, I no longer fear the holiday family thing.
  12. I am thankful for everyday and the possibilities it brings. I am thankful for my family and that they were all in town yesterday, it was noisy and overwhelming even with earplugs but I wouldn't change anything. I'm thankful for the support here and you have in many ways become a piece of my life.
  13. Wednesday morning after spending the night in Venice FL with some special friends we were headed home when the wife decided it was time to make a little side trip I had promised myself I would make one day. Well 1 year and 2 weeks later I walked into the rehab hospital I had been wheeled out of. Back then balance, let alone walking were always fraught with peril, now we wanted to show them how far I had come thanks to them. First stop was the nurses station where we all recognized each other. We visited for a bit and we both thanked them for all they did for me.To the new staff I was introduced as a walkie talkie, someone who returned who was once again a functioning person. I will wear that title with honor. Then a trip to the PT/OT wing or the palace of pain.The place where I took my second set of first steps. A couple of the therapists were there and made over me and insisted I show them how well I could walk. I made it through their little improvised obstacle course and got assurances they would tell the ones off that day what they had missed.As we headed out they were telling one of the patients that there was no reason they couldn't do the same if they wanted it bad enough. Next stop Speech Therapy. That was the individual more than any other who put me back together, made my brain start its journey which is still underway. We approached her office and waited outside as she was on the phone. She looked at us and glanced away then back, and she recognized the wife and I. When she invited us in she gave me a big hug and I think we both got wet eyes.We spent the most time with her and she was amazed at how far I had come. When she first got me I was not aware or oriented, mostly just meat on wheels. She was responsible for reintroducing me to my brain and thinking. She asked lots of questions about how I was doing and what my challenges had been, We spent about a 1/2 hour with her. As we left the hospital I had a flood of confused emotions, but mostly a sense of closure for both me having seen them and them seeing that all the work they do for us isn't wasted. Seeing the people who put your mind and body back together when it was just a pile of broken shards...priceless.
  14. That is excellent. I know that I often don't notice the improvements until my wife points them out. Taking that one more step pays off over time. You should be proud of your progress!
  15. scottm

    Nerve Block

    Hopefully that will provide some relief.
  16. That is excellent news. I hope you get to enjoy the holidays together.
  17. Your nurse sounds she is suffering from malicious incompetence. She is endangering the residents with here actions.
  18. Jay, I sometimes have spatial and situational awareness issues especially when fatigued. I usually just laugh it off as a side effect of my 'upgrade' which didn't take. I do sometimes blame the invisible cats for my lack of grace which gets interesting reactions at the grocery store, etc.. My brother refers to me as twinkle toes...how undignified, LOL
  19. My wife has saved me from the medical community at least 3 times. Twice the nurses came in with a syringe and my wife asked what it was, nurse says insulin. Wife points out I'm not even vaguely diabetic so no insulin, argument ensues, wife wins when they do a finger stick and no sign of sugar issues. They did the same thing about 6 months later with the same results. Found out insulin was in my chart because I got it one time before heart surgery. Took an act of god to get it modified. Also had a doc who wanted me to take a pill and we asked what it was...Vitamin K. Quick call to my cardiologist by the wife and he tore a strip off the hospitalist as my coumadin shouldn't be messed with if not causing a problem. We call things like this creative incompetence.
  20. Next Wednesday at about noon will be my 1 year anniversary. That has been weighing on me for the last month and making me withdraw a bit while I evaluate everything my wife and I have been through. I'll start by saying my wife has been a rock and my greatest advocate. Woe be to the doctor, nurse, etc that she thinks is not providing an acceptable level of care. I'm only as good as I am now because she made sure everything was as it should be and she pushed me onward. That started when they told her I was in a coma and not expected to survive, only recently have I regained my ability to function without some level of assistance, so she can mostly relax now. One thing I have that many us us don't is a well defined and authoritative cause for what happened.They know what happened and why and how. Nobody's fault really, sometimes things just go sideways in surgery and the outcome is sub-optimum. So, some things I've learned... Dying is easy, just let go. It is actually quite peaceful and tempting. Choosing to live on the other hand is hard and clawing my way back to the living and my wife and family was the hardest fight I've ever had. After that nothing is scary anymore. Most things people think are big deals, aren't. Hopefully they never get to meet the big deal we live with. It is a beast with a hunger to consume us if we let it, don't let it drag you into the darkness of self pity and doubt. People are a bit afraid of us. We represent mortality. Some friends won't be able to deal with it on some level, let them go gracefully. Embrace the friends who stay and the ones you get after the stroke, they get it. Bonds will form that can never be broken. I remember the first day I came home and a couple friends came over to outfit my bathroom with rails because they just wanted to help. They continue to be there when I need them and I'm there for them. True forever friends are precious. We improvise, adapt and overcome. Lots of people talk about it, we live it everyday. Doctors keep us alive, nurses and therapists put us back together. Final thought - Patience is our best ally. Too many times I thought that 'this is as good as it will ever get'. Then I wake up one morning and realize I can move a finger or the brain fog is lighter. Baby steps and savor each victory for a victory it is. I never would have thought that one day I would cry over being able to open my hand a little and then feel it necessary to tell my therapist 'watch this' and feeling like I had slayed a dragon.
  21. I see you are a member (as are many of us) of the No Bureaucrat Left Behind program. They need love too which is why God made badgers. Scott
  22. I have a friend on methadone, works for her but it is tricky stuff to get dosed right I hear. Wishing you the best and let us know how that witches brew works for you.
  23. scottm

    New Diet

    Sounds like the first hospital I was in. My wife says I just kept pushing the food away and the kindest description I gave was 'that's vile'. There must be someone you could 'invite' for dinner. Keep up the good fight and don't let them beat you down. They get paid for the work they do and are accountable to all of you.
  24. He is a more than competent doctor and seems genuinely concerned. Because I had a bleed found only by hemoglobin depletion we do that test every visit. He says he doesn't like getting blindsided, I'm OK with that. He also has a dry sense of humor that aligns well with mine, sorta dark but in a good way. On my third visit to him he wanted to see me walk and took me into the hallway. We walked to the end of the hall and he opened the door to outside, pointed across the parking lot and said his partner would see me next, he was pointing to a vets office. We both had a good laugh when I said the vet would shoot me if I was a horse. Fast forward to this visit, nurse goes over the meds and takes me to the examining room, I'm waiting and go over to look closer at a picture on the wall, after a bit a voice behind me asks what did I do to make his nurse put me in the corner. We laugh and take our seats and start the question and answer dance, how have you been? Why did you stop taking the Lyrica? How's the pain? etc. My voice has been a problem and he is referring me to an ENT for evaluation. He says they will need to put a scope of some sort down my throat but will give me a local first. I point out the last time they did something like that there was no local when they put in the breathing tube. So time marches on, I continue to slowly heal but have come to the conclusion the pain and I will remain companions for the foreseeable future, the side effects of crazy high blood pressure or tachycardia both would have bad outcomes. Antidepressants with bad discontinuation syndromes like cymbalta are off the table. The doc understands my thinking and says if it gets worse to come in but to carefully consider all the pros and cons of my various options, but for the moment I can manage the situation even if it means wearing sweats in the summer in Florida and the strange looks I get...if they only knew.