Stroke Survivor - female
  • Content count

  • Joined

  • Last visited

  • Country

    United States

About cons2g

  • Rank
    New Member
  • Birthday 06/13/1963

Contact Methods

  • Stroke Network Email

Shared Information

  • Stroke Anniversary (first stroke)
  • How did you find us?
    Google Search

Registration Information

  • First Name
  • State
  • Country
    United States

Recent Profile Visitors

123 profile views
  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. Fun! Looks like the kind of vacation things we used to do when I was a kid in Iowa! I still like to take summertime vacations by simply scheduling a couple nights in some little out-of-the-way place I've never been and take off to see what there is to see. This looks like the kind of place I would end up - and enjoy! Of course, that's one of the activities I've lost (at least for now) because of the stroke. Too many unforeseeable variables in trying to sleep in a hotel room, plus I don't know how I'd manage toting my luggage. Hopefully, as my health continues to improve, I'll reach a point where this won't be more of an ordeal than a relaxing break. It will also mean I can travel the 450 miles to visit my family instead of forcing them to come here all the time and have to rent a hotel room because my house is too small for all of them. In the meantime, we're all just hanging on until spring (it's winter here in Minnesota right now) - that will be a vacation in and of itself! All I'll have to do to relax is step outside! Though we have had a spring preview this weekend - high's around 60 Fahrenheit when our average high is 27! Even a 90% chance of thunderstorms tomorrow! Yippee! Sorry, I'm way off topic here, but it feels so good to just have a normal conversation with someone! Please feel free to ignore me and go back to "Sensory Overload" :-)
  7. 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!
  8. Hi, everybody, and thanks so much! I had posted this in the caregiver room originally, but Kelli told me she moved it. I didn't know where she moved it to, and I just found it today. So I've been reading all your answers and feel so appreciative of your support! Thank you! I'm going to try to respond to everyone, so you may just want to skim over this and read the parts that are interesting to you - I can tell already it's going to be very long. So first of all, I wanted to address the insurance question. I have Medicaid, and through them (in my state of Minnesota) they have something called a CADI Waiver. I qualify for that, which provides me with a caseworker who sets up services the insurance approves. I was in the hospital for three nights, then a nursing home for rehab for about 6 weeks this summer. When I came home in July, I was supposed to have all these different services in place so I could go home alone. The only thing they got set up was to have a pharmacy deliver my meds. I didn't have a caseworker, so I didn't have any housekeeping services in place. Actually, they sent me home July 2, but I couldn't do anything that needed to be done, including get groceries and feed myself, so by that evening, I was back at the hospital, on my way to the nursing home again for a couple more weeks. They were supposed to have a discharge meeting of all my healthcare workers at the nursing home before I left, and they didn't do it. They were going to try to discharge me again without the meeting, but I got mad and told them they'd better do things right this time or I wasn't leaving. So the social worker met individually with each of the people who should have all met together, that's how we got the pharmacy delivery set up. But I didn't have a caseworker assigned to me until November 1, and she didn't line up a housekeeper until the first week of December. That was the first of three housekeepers - she didn't want to work, she thought she was doing her job by throwing in two loads of laundry and cleaning the bathroom in four hours of service, the rest of the time she spent sitting on the couch talking to me about her sad life (I don't have the energy to get sucked into all her drama) and spending one hour filling out the paperwork so I could sign it so she could get paid for that week. When she forgot to even show up the third week, I was done with her, but had her for three more weeks (one of which she again forgot to come) while they lined up someone else. The second housekeeper was very wonderful, but the second week she talked to her nursing service about the schedule, then didn't show up - no one talked to me about that. The third week she came, but said she didn't want to ever come on the original day we'd agreed upon (the day the trash has to go out to the street, which I can't do). The fourth week, she didn't show up or answer my phone message asking where she was. After a three-week break, I am now on my third housekeeper. She seems to be more organized with her schedule, and it seems like she'll work out, but she's only been here once. That's just the housekeeper. CADI Waiver provides for all sorts of things, like in-home nursing services, a free pass for the Metro Mobility bus ($3 each way otherwise - I don't have money for that), a free Life Alert button, possibly someone to help with keeping my flower beds weeded in the summer, lawn care, possibly help with things like cleaning gutters, and all sorts of other services. We have not had time to even look into any of these because we've been so caught up in trying to get a housekeeper. Also, they changed my caseworker in January, so now I have to start all over with her. I've talked to her once for a few minutes; she says she has no case notes from my former caseworker. Then she said she had to go to a meeting and got off the phone, but promised she'd call me back the next morning (Feb. 7). Haven't heard from her since, even though I've left a couple of phone messages. Right now, she's supposed to be finding me an ILS (Independent Living Skills) worker to help me apply for SSDI. I am completely overwhelmed by paperwork right now, to the point where I start looking at what I have to do and my brain just shuts down and can't read it. And taxes are coming up - this ought to be pretty! I'm also supposed to have an inhome nurse to help me with managing my 14+ prescriptions - I'm losing my mind trying to make sure everything gets refilled at the right time because various insurance policies make it tricky. At my primary care office, they have a case management worker (as far as medical things go, not any of the CADI Waiver stuff). She is very helpful, and has done things like help me get my meds when the insurance screwed up paperwork and cut me off for a month in December (another insurance mess for which I could have used an ILS worker to help me fix it). Right now, she is trying to help me find someone who can handle toenail cutting as I would have to be a contortionist to get the correct angle on mine and a few of them don't fit the shape of the nail clippers even then (hope that's not too much info!). Technically, the CADI Waiver person should be lining this up, but I can't get ahold of her, and the PCP case manager volunteered to help with it. God bless her! I've thought about doing an end run around the insurance and just hiring people to do some of the things I need, but I'm unemployed right now and my sister is helping me, but it's only enough to scrimp by on, not enough to start paying for additional services. Plus, that still leaves me as my own advocate, so it doesn't help with that end of things. Online shopping: Love it! Except that there's always that $5 or $10 delivery fee, which can really add up after a while. I do have my groceries delivered, but the place that delivers marks their prices up, so I end up spending a LOT of money on groceries, plus that ever-present delivery fee. Also, they have atrocious produce, so I use a second store that has wonderful produce but is equally pricey on the groceries, and they charge me $5 to have someone else pick out the food, then I drive up to pick it up. Of course, I still have to carry it all in the house when I get home, which the first store does for me when they deliver. Plus, you know how you have those things that you just run out of before you really need more groceries?! It would be helpful to have my housekeeper set up so I have time to send her to the store for a few things once in a while. Though I am recently healed up enough to (on some days) walk into the store, go directly to three or four items I need, stand in the checkout line, and still have the strength to carry them in the house and put them away! It's so exciting!! I would still like to have the option of sending my housekeeper, though, if I have, say, a dozen items, because it's cheaper than having them delivered (plus that amount would carry a $10 delivery fee). Also, the store that delivers doesn't carry everything I need (which is weird, because some of the things I've wanted to order I've bought from them back when I could walk into their actual store). Becky, I like that bank card idea - your hubby is a smart guy! :-) I looked into disability services, senior services, and volunteer services a few years ago because I had back problems from car accidents and couldn't do snow removal (the city decided I needed a sidewalk in my yard, then told me it was my responsibility to keep clean or they'd fine me). Basically, what I was told was that senior services start at 65, disability does not make me senior service eligible, and if I want a volunteer, I should call the local churches and ask for some youth trying to work their way through confirmation (of course, even if any of them had wanted to help - and they didn't, even though I offered to pay them - it would only solve the problem for that one year). I suppose I could try contacting them again, but I don't hold out high hopes. Of course, I guess "low" hopes are better than none - and worth pursuing! I hope I've answered everyone who took the time to contribute here. Sorry this is so ridiculously long! But I really do appreciate the support from everyone. Thanks again!
  9. 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!
  10. Ah, a quiet little town - sounds absolutely lovely! I've thought about moving to a small town (in a warm place!) but I wouldn't be able to find enough work to make my living as a pianist, so I'm stuck with big-city living in cold Minnesota. Fortunately, the suburb I live in is very "Beaver Cleaver" - built in the 1950's and '60's with an actual Main Street of shops and an old-fashion feel to it. Unfortunately, our City Council is intent on modernizing us. I think they believe we need to "keep up" with the rest of the city, which is dumb, because we're the suburb people know as having that small-town feel and that's why they come here to shop, especially at our half-a-dozen or so antique stores. We used to have a tree-lighting ceremony on the day after Thanksgiving, but they cut down the tree so they could remodel the tiny plaza where it stood - no more ceremony. They've started tearing down buildings downtown and replacing them with high-rise luxury apartment buildings that block the sun from Main Street. The area across the highway from my house has been sold to a major manufacturing corporation, so that entire area of several acres has become modern office buildings and production sites, along with parking lots and ramps. Why they feel the need to eradicate our beautiful friendly small town is beyond me. I don't see anyone racing to spend the day - and their money - here because we have high-rises. Fortunately, they were planning to erect a high-rise apartment building along a scenic road in a residential neighborhood, and at the planning commission meeting the other night, they were talked out of it. Good grief! People!!
  11. 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!
  12. 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.
  13. Hi, I know nobody's typed here for a while, and pretty much everything possible has been said here, but I just wanted to connect in with other people who "get it!" I had my stroke Dec. 3, 2015, and am still dealing with too much hustle and bustle at times when I go out. I can handle driving in heavy traffic (well, at least as well as I ever could pre-stroke), but when I'm walking among crowds with my cane, I get nervous because everyone is just whipping past me while I'm trying to carefully maintain balance. No one around me understands how frightening it is when they come flying around me from behind (where I can't see them coming) and I jump because I'm startled and feel like they're so close they're going to bump into me, which a "normal" person could handle, but I'll probably fall down if they do. I've learned to just focus on what I need to do and try to tune out the "speedy" folks around me - after all, I used to be one of them! So far, I've been fine, even at the middle school where I sometimes work, in which kids WILL just walk into someone because they can't figure out how to get around them! Kids - gotta love 'em! I've also learned how to not mirror people who talk rapidly and have way more energy than I do. I tend to communicate with people in the same way they choose to communicate with me (which actually makes people feel really comfortable around you!), but I cannot keep up with the high-energy speed talkers, so I've given myself permission to talk and respond much slower than they do. So far, people still seem to like me :-) I had one doctor in particular who talks so incredibly fast that halfway through my first hour-long appointment, I hit a wall and couldn't hardly function for the rest of the time. I had to take a two-hour nap after I got home! Now I talk at my own pace when I'm with her; sometimes she jumps in and cuts me off, but I understand that's just her energy level and I don't have to be the same. It works, and we get along great :-) Thanks for letting me chime in, even if I'm a latecomer to the conversation! Guess that's taking care of myself, so it's another way of doing what I gotta do!
  14. Hi, I know this is the caregiver portion of the chat rooms, but I saw this topic and wanted to just read a little about what caregivers are going through and how they're dealing with the burn out of their work. I can very much relate to that feeling as I am my own caregiver since I am living alone, my closest family are 500 miles away, and my friends seem to have forgotten that I exist. It seems the only human contact I have is doctors, therapists, and insurance people. Since there are supposed to be people coming to my house to help with things (housekeeping, errands, medical care, etc.) but the insurance is dragging their feet getting things set up, it falls to me to do all my caregiving. Not only does this involve having to live without some things (like clean laundry), but it means hours and hours on the phone with people trying to get services set up and explain - again! - to the insurance why they were supposed to have this all in place last summer. I can't even stand the feel of the phone against my ear anymore - everyone gets called on speaker phone. All my spare time (between doctor appointments, physical therapy, and trips to the drive-through pharmacy window) is spent going through the list of people I have to call and leaving messages for people who won't call me back. I'm so sick of it!!!!! Does anyone have any suggestions for how to lighten this up a bit? I'm so sick and tired of being the patient AND having to do all the caregiving work! I would love to connect with someone about this, even if it's just to know that I'm not alone in the caregiving 24-7 driving me crazy!
  15. 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!