Stroke Survivor - female
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About cons2g

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  • Birthday 06/13/1963

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  1. I've never been a drinker, not even in college, but the school I went to was a big party school, so that was my choice every weekend: Do I sit alone in the dorm, or do I go watch my friends get drunk? I know, the drinker may think they're having a blast, but it's not so fun to watch.
  2. I've noticed that when I walk without my cane (just around my house or sometimes in PT) I don't walk like I'm drunk - I walk like a toddler who's still learning. Fingers wide apart, hands extended from the side, wobbling back and forth like a penguin - definitely toddler time! Just wish I was as close to the ground as they are in case I fall! I agree about going out into wide open spaces. Even with my cane, things like walking across the parking lot to get to where I'm going can freak me out, and I have to keep telling myself to breathe, relax, just walk normally....if I let myself think about the possible fall I fear, I start falling, so I've had to learn to instantly block out that image and instead picture myself strong and healthy as I cross the parking lot with ease. Nobody else sees that when they look at me, but as long as I picture it, I can make my way safely across the space. I also have a fear of hustling, bustling crowds knocking me over and children doing likewise. I can't get upset - I didn't know any better before I had the stroke, how would they know? So yes, sometimes I just have to stop and focus on holding my ground until the tumult passes. If I can stop near an object that I can lightly touch, it really, really helps.
  3. ​Sorry, I just wanted to add one more thing. Every time I suffered some sort of abuse, neglect, or other substandard care at the hands of the professionals, I remembered that most of the residents of the nursing home where I was doing temporary rehab are unable to mentally process or verbalize what's happening to them. They are at the mercy of anyone who decides shoddy care is good enough - they can't stick up for themselves. So I felt that part of my purpose in being there was to speak up on behalf of all the residents who couldn't. I think those of us who are cognitively capable of defending ourselves need to do so as much as possible in order to protect those who aren't able to fight for themselves.
  4. Whoa, Sassy, I think you were in the same nursing home rehab that I was last summer! My favorite was the nurse who told me I had to stop arguing with her about the meds she brought me and that I had to trust her because she was the nurse. She was trying to give me a pill for my enlarged prostate (I'm a female). There was a nurse's aid who came in the middle of the night because I hit my "help" button since my right calf was cramping and because of the stroke symptoms, I couldn't get out of bed to make it stop. I asked her to hold my foot bent up towards my face until the cramp released. She grabbed my toes instead of around the arch like I asked, so I had to fix that (still in pain from cramp). Then she kept bouncing it up and down - OWWW! I never did get her to just hold it in place; she got distracted by the fact that my feet and ankles were swollen from the lymphedema I've been in treatment for for over 20 years. She kept wanting to let go of my foot (leg still cramping) and get something to elevate my feet. I assured her that the elevated foot of the hospital bed was sufficient, and would she please treat the cramp. She was worried that my swelling looked so uncomfortable. I reminded her that it wasn't but my leg cramp was, at which point she started arguing about how qualified she was to help treat the lymphedema, then got mad and stormed out of the room, saying she'd let the nurse know I wanted her. Definitely abusive - you can believe I reported her when the nurse came in and again more formally first thing in the morning. And it worked - she walked on eggshells around me after that, and stopped trying to boss me around. We got along fine after that. One thing that helped me (because I had a lot of crazy nursing staff at that place) was to find the one or two people who seemed to be rational and ask them who I should talk to about the poor nursing/abuse. I found that got me right to the top, instead of filing multiple complaints, and the problems were dealt with immediately. Someone earlier suggested keeping a log of incidents - I did that, and someone on the staff actually took it to the head of nursing to get things straightened out. It was a good idea to keep the log.
  5. My pain is not as severe as yours (background constant, about 3 or 4, occasionally shooting up to 8 or 9 - can't put any weight on my leg). I just wanted to comment about the "naked leg" part. I have the same problem - I wear capris or shorts all the time because I'm uncomfortable covering my left leg, but it's amazing (and amusing) to me how many total strangers feel comfortable saying, "Aren't you cold?" Yes, it's winter in Minnesota, but I would never have the nerve to criticize someone's wardrobe, especially a total stranger. People are weird :-) But...we do what we have to I put on my capris and my sockless shoes and my warm sweater and my neck scarf and my heavy winter coat and my gloves and head out the door! At least my left leg thinks it's not too cold as the temperature sensation is totally messed up from the stroke :-) (Always a silver lining....) And don't get me started on bed covers.....
  6. I had this same go-round about the oxycodone I was on. The doctor in the rehab facility took me off the Aleve I had been taking (for years!) for my back pain from car accidents. It was also helping with pain in my knee (connected with the reason I was in rehab). I told him that if he took me off the med controlling my pain, he'd have to give me something else to take its place. He prescribed the oxy and fentynol patches (another narcotic). A few months later, when I was back to seeing my regular doctor, she said that narcotics are not a lifelong solution as it begins to have adverse affects on the body and can possibly be addictive. So I voluntarily weaned myself from 5 5-mg doses per day down to 2 doses of the oxy and completely got off the patches. At that point, I became insistent that I would not cut back anymore until my doctor found an alternative to control the pain. Unfortunately, my awesome doctor was transferred to another clinic, so I had to find a new doctor at my clinic. The first doc I saw said I had better start portioning out the half-prescription I had left because he wouldn't refill it. I looked for another doctor. She said she would refill it, but she wanted me to get off it soon. That was fine, but I was also seeing a physiatrist, who started prescribing Baclofen as a substitute, and one of her colleagues suggested acupuncture. I'm off the oxy now, the Baclofen seems to help somewhat, and I just started the acupuncture, which is promising. Even after the first session, I noticed reduced pain for 3-4 hours. Usually, the idea of acupuncture is to have several sessions and build up the effects in your body, then you start noticing. So I have high hopes for the acupuncture!
  7. I've run into this weird phenomenon the past month or so where half my doctors and physical therapists feel the need to assure me that, at just over a year since my stroke, I need to accept where I'm at and adapt to it. Baloney! I tend to stabilize at a certain point in the healing process, then all of a sudden, one day I'll "jump up" to a higher level; then my body takes a couple months or so to stabilize there, then I'll suddenly "jump up" again. My most recent "jump up" was around the first of January 2017, so I'm still in the stabilizing mode for that one. I don't know why suddenly all these "experts" have decided that I can't get any better. My PT keeps telling me that I'm only supposed to have PT for a few weeks after the stroke, and I've been at it for around 10 months now, so they're going to have to wind down my sessions and bring them to an end in the next month or so. The thing is, every time they start talking like this, I have another "jump up" that gives us more PT things to work on, so we keep going. I'm not really sure why someone's medical treatment should be based on the calendar to the point that the provider is trying to discourage the patient so the patient will agree to give up. The PT blames the insurance company, but we've long passed their deadline, and all the PT has to do is submit a request to continue by showing the progress I'm continuing to make, and the insurance approves it. I know because we've already done this three times, and the insurance company hasn't batted an eye at it. I guess I'm tired of having to stand up to the PT that has been telling me for months that I can't expect to get any better (I've had three or four "jump up" moments since she started talking to me like this). Obviously, she can see my improvement, since she comments on it and extends the insurance coverage for more sessions. I don't understand where she's coming from. Maybe it's some weird mind game she thinks will help me want to fight for the improvement just to prove her wrong :-) Sorry, I'm going on and on, but my point is that I've decided to believe the truth - I am getting better every day, and there's no reason to give up hope of that pattern continuing. I don't know where I'll finally end up, but I do know that where I'm at now (though I'm WAY better than I used to be a year ago) is not my final stopping point on the way to healing from the stroke. And that's not denial - that's a logical conclusion based on my personal history of healing. Besides, what good would it do to stop hoping? Does the world really need more depressed people? Do I really need to be one of them? Nope, the only logical conclusion here is that HOPE is the strong, healthy way to go!
  8. Hi, Tracy, I've been finding myself thinking lately that all I ever talk about with people is my stroke. I'm even getting tired of hearing it! So, being the analytical person that I am, I thought about it and realized that we tend to talk about whatever pops into our heads, which is usually something current. If all I spend my time doing is going to the doctor, going to physical therapy, trying to figure out how to handle housework and meal prep/clean-up based on accommodating all the symptoms I have, planning when I'll have time for a nap, etc., etc., then all I have to talk about is the stroke. So I've started planning lists in my head of things I can talk to people about besides the stroke. For example, I know my mom will call me every few days, so as I go through each day, I'll find myself taking note of things I can tell her when she calls, like "I finished another 3-inch block for my quilt" or "Oh my goodness, it's going to be 64 degrees here on Friday!" Of course we'll talk about my health, but that doesn't need to be the entire conversation. Another thing that helps is if I think of things I want to ask about her or other family members. So then I don't feel like the whole conversation was about me and my stroke. Plus, if a friend surprises me with a phone call, I can use the list of things I want to tell my mom to talk to my friend, too. When it comes to talking about the stroke, I have to gauge each person. Some people say, "How are you doing?" and when I say, "Oh, I'm hanging in there," they reply, "Wow, that's great! Glad you're doing so well!" and run away. I've realized that some people are uncomfortable with my not feeling 100% and they don't know how to respond to that, so they just go on auto-pilot and smile and get-the-heck-out-of-Dodge! So I'm learning to be able to sense who wants to really know what's going on in my life and who just wants to let me know they care but doesn't want to get too involved. It's all good - I don't need every single person I know to hover over me! As far as dwelling on the stroke myself, I agree with (was it Becky?) who said earlier that finding hobbies or other things to do is the best way to distract myself. Of course, they offer a new and wonderful opportunity to think about how I'm going to physically accommodate them, but once I get past that decision, I can just focus on the joy of what I'm doing. Sometimes, it's something as simple as asking myself a question about something in the world outside my house, then spending time online looking for the answer. I get to be distracted, and I get to be smarter! And it doesn't take a whole lot of my energy, especially since I can quit whenever I want. Don't know if this helps you any, but maybe it will help someone. Guess it helps me, because I have way too many thoughts in my head to be unloading all of them on my friends, and if it overwhelms you guys here, you can just skip over it, so (I hope) no harm done!
  9. I haven't had the eye and palate issues you're working through, but I can relate to having weird symptoms after the brain stem stroke. For example, my left hand has started cramping to where one of my fingers will be perpendicular to the palm of my hand, but as soon as I rub the knuckle at the base of the finger, it relaxes. Has started feeling like it wants to cramp again, which it didn't used to do after I rubbed it, so I'm having to be more cautious with it. I play piano for a living, so this is a pretty big deal for me. I've mentioned it to so many doctors that I've started repeating myself because I can't remember who I've asked about it. They don't have answers, just guesses, which I'm reluctant to pursue, since I'm already taking about 14 different prescriptions and don't really want to add more, especially if the doctors don't seem to have high hopes for a positive outcome ("I guess we could try taking XXXXXX and see if it relaxes those muscles in your hand, though it's probably going to make you even sleepier than you already are"). I've had other unusual symptoms that the doctors seem to think are unrelated to the stroke, but I figure if it started after the stroke and hasn't let up, it probably has something to do with the stroke. That brain stem has control of so many involuntary body functions, it's a little scary to stop and ponder what exactly we have survived! I am glad that you found someone to diagnose the problem (I read online a little about it, and apparently it's EXTREMELY rare!). Please keep us updated as to how you're doing, especially with the surgery next month.
  10. Wow! I'm impressed by your reading fortitude :-) This topic sounds interesting. I don't think I would want to read the whole book, but it would be interesting to skim over some time - I might check and see if the local library here has a copy (I'm often surprised at what they carry!). Thanks for sharing!
  11. It seems to me that if I do rehab and nothing gets better, at least it's helped maintain what I have, so it's still benefitting me. On the other hand, if I stop rehab, I'll never even have a chance at getting better, and may even lose some of what I have. Even people who have never had a stroke need to exercise every day to maintain or improve their health, so why shouldn't we take advantage of the exercises that are tailor-made for us? It's like having our own personal trainer! Sure can't hurt!