ksmith

I had my eye surgery that I have been waiting for since my stroke. Realignment of my eyes from double vision and hopefully correcting my nystagmus or bouncing of the eyes, mainly caused by nerve damage from stroke. Eight years of wishing came down an optometrist who referred me to a neurologist at University of Pennsylvania hospital who in turn referred me to a surgeon, also at UPENN, that for the first time gave me a glimmer of hope and a surgery date. You can only imagine how excited I was and impatient for that date to arrive. I was told that the procedure was routine, which I knew, and I could tell a difference immediately after surgery so I was so ready for this. The day finally came and I was ready. My parents and I made the 1hr 30 min drive to the hospital EARLY in the AM, so we were ALL just bowls of flowers and happiness, but with some coffee, we were on our way. I can’t tell you exactly what happened in the hours of being there for my memory causes that day to seem like it was years ago. I’m finally taken back and my parents came back before I was taken away to the operation room. The doctor came over to talk to me and I can’t lie but since he was wearing his mask and me without t glasses, I basically smiled and nodded. The surgery took roughly 2 hours (give or take). When I came out I know I had an ice pack across my eyes for my father took a picture and posted it to Facebook (I would have done the same thing). I know getting into car after I was able to go home, for this was a same day, I was wheeled out and got into my parent’s car not being able to see. I experienced something I have never had in my life: MOTION SICKNESS. I started to dry heave while my father was driving and my mother was in the back seat rubbing my back. Thank goodness they gave me a pink bin, just in case. Once I got home and was able to take off the ice packs and get my eye drops, I finally was able to look out of my eye… only one for the right eye was swollen shut. I should have known the right side was more extensive and required more work to it. Not only did tendons and muscles have to be cut and to align but I also had terrible nystagmus that needed special attention, in both eyes but more severe in my right eye. Only seeing out of one eye was devastating for me for forgetting everything that was wrong with my eyes, did what I promised myself I wouldn’t do: build my hopes up for an instant miracle. So of course I was depressed. Once my right eye was able to open, I saw double again. Was I supposed to? I called the doctor and made a follow appointment as stated on my release papers. My father came with me, mainly for I can see well enough to drive and we after a going to the wrong buildings and many brisk walks, finally made it and the doctor was pleased. I still couldn’t understand his reactions. He asked me if I saw an improvement. I sat there and thought and said yes that my eyes weren’t bouncing as much. Still it didn’t make sense to me. I should know that recovery takes time and at that point it was only a week. I was just so built up to have instant results. He checked my eyes and I MAY still need the slightest of prisms for I still have a slight nystagmus in both eyes, but that is a nerve issue caused by my brain injury and is almost impossible to rid of but thankful to this doctor that made it less of an issue. I just have to allow myself time to heal for the procedures he did weren’t your everyday alignment of eyes. I mean, eight years ago I was told that there was no surgery available to correct my eyesight and now look. Not perfect but every day is closer.

holy cow. 120.. I started to sweat for you. I think choosing to wait was very wise.. melting is something I like to feel.. (dry heat my foot) hot is hot

I appreciate you're asking for a positive however this is her POV on the experience. She has gone through so much and I know she knows looking for a positive is important but I believe she can blog about how she felt through this. Furthermore, I can not even begin to understand the feelings she has and how the slightest discomfort is excruciating.

Well the day finally happened. My worst fear. I received a letter regarding my healthcare. I get a subsidy to help pay for my premiums to have insurance. I have to look at all my doctor’s share the same insurance, I also have to get a premium coverage that allows me to go out of state to a better hospital system that specializes in stroke. Well I have, as well as everyone who gets Social Security Disability, Medicare part A which basically covers hospital and other basic needs. I’ve never used Medicare for any coverage, for reasons I can’t get in too, legal, so this letter I have states because I have Medicare A I MUST get part B or C ( general healthcare) and will have to get D ( prescription) coverage. Ok so they say it would be less expensive to what I pay now… Which I know isn’t true, largely in part to the subsidy lowers my premium. Now that WOULD sound tempting however the coverage is spotty. The will decide if the medical need or procedure is deemed medically necessarily (per suits who sit behind a desk). I don’t know I’m very comfortable with that. The positive is I’m locked in until September 30 of this year. I would not have a chance to have my eyes operated on for they don’t cover eye exams so I would have never been granted the office visit for I would have to pay for it out of pocket. I know I just have to sit back and be happy for what I have and the chances out there. But with the repeal of marketplace (granter of Subsidy) I will again be charged and ‘pre-existing’ conditions which brings my premiums near to Cobra costs. Sucks when you’re on a fix income. I sound like a spoiled brat but im just wanting the best for my life.

Cheers!! That was a great reminder of goodness out there

xxooxx yes

Today I had a great session with my life coach, yes they are a real thing, and we discussed certain events in my life that caused me stress and hardship in my life. Some of these events were started back in High school, a place where kids are notoriously evil, and they stuck with me from that time forward. Silly I know, but it’s amazing when you are blindsided by kids like that. Growing up, I lived in a small beach community with MAYBE less than 100 people who lived there year round, and most were elderly or grown-ups. From what I can remember, there were a total of 6 kids there year round. I remember, I never saw an African-American person until I was 7. Mayberry. But I loved it. It helped me have an amazingly great imagination and my sister and I played together and formed a tight bond. In High school, it was a blend of many schools in our district into one, was my first time meeting different clichés that I was not used to. Call it Naïve or call it just being a good guy, I just assumed that everyone was nice like we were raised. I saw many types of “rich” kids that know what to say to break down a person and begin to look at their own life. It was foreign to me to think anything other than be nice and happy. Then there were the ‘smart’ kids, Well that was like a kick in the gut for me. I was smart. I am smart. I had ADD along with a learning difficulty of comprehending what I read and since learning issues as that were not talked about much, I was just labeled as ‘slow ‘ or ‘dumb’ and that can cause stress for a young mind. I know I’m not yet it wasn’t until I was older and correctly diagnosed for ADD and a learning challenge was I able to fully understand I wasn’t all of those things yet the damage was already done to my self-thinking. People don’t fully understand that negative thinking can help pave the road to further decision making. The need of feeling acceptance, in retrospect, could have allowed me to fall into the grasp of my first ‘love’ that turned mentally and physically abusive. I did get a wonderful son out of that and for that I’m happy. I was never raised with abusive relationships or people in my life so how could I have stayed? That’s a question many people aren’t able to answer and may never and it’s that question that is so hard for me to answer; ‘Why have I stayed with those negative thoughts for so long?’ WORDS Those thoughts are just words much like reading a test or email. They are just words but it’s the inflection and context we decide to hear them in. That’s how fights get started. We ‘hear’ what we want from words. “I said I don’t like pizza” is that someone getting snarky and stressing the words I SAID or is that someone telling me what they told someone else or telling me what they may have said but I didn’t hear it? So many possibilities from one phrase. Similarity to the words someone said to young me. I had the power to decide how I interpret them. Easy right? So as life progressed, I can only imagine how I acted and spun words in my favor. Well the ‘good’ news is, since my stroke, my thinking is more positive however, the old me is still hidden inside my head and acts as my rope holding me back sometimes. And that’s where today comes in. My life coach gave me a simple activity to do to release those negative thoughts. “They are just words”. Write them down and close my eyes and imagine someone with whom I hold in high regards, and imagine what they would tell young me and me today. When finished, tear them up or burn it and release those silly ideas. You know it helped. It’s a process so it’s not going to change overnight. But it will change because I’m worth it!!

Sue, What you are doing and still doing, out of the kindness of your heart, by far, is very selfless. The fact that you are sharing your experiences that you had gone through is very helpful to so many others that are struck by stroke. I know that staying here is something that you aren't required to do but the love and compassion you have for helping others puts you in a league of my utmost respect and admire. Enjoy everyday and I wish nothing but love and kindness in your life

I like that!!!! Great job

that speaks to so many. You have helped me to walk on a similar path and for that I'm very happy you share your knowledge

that is shameful, in my opinion, to have to wait that long

(( Copy of post in Roman font )) Some people would assume at times I share a lot of the traits as someone who is Bipolar for I tend to be riding on a roller coaster of emotions. I don’t have the extreme changes in my personality like deep lows that keep me in bed and I don’t want to assume I know those feelings but I know I’m not nor ever have been. My issues may appear like depression when in fact they are exhaustion. Mental exhaustion. On a regular-season basis I have days in which I wake up, meaning I open my eyes, around 7-9 am and I feel like I have 200lbs of weight keeping me down in bed. I may be “awake” but my mind isn’t quite ready to conquer the day and I lay in bed watching Hulu or Netflix on my tablet. I’m not hungry or thirsty and can go until Noon or 1:00pm before I even have the energy to move. Yeah, I may get up to use the bathroom but that’s a far as I can go. I can’t even begin to tell you, how many people have accused me of having depression. “Get out of bed and just try” or “You should just go out more”. Yes I agree but I can’t even begin to explain I’m not depressed. I may be sad a times but in no way am I depressed so all the positivity needed to break that cycle won’t work on me. My brain in COMPLETELY EXHAUSTED. I can’t imagine what someone with depression must be going through. I am not trying to equate my issues with what someone with true mental de-stress must feel all I can I talk about is my situation. Sure I was depressed or very upset in the beginning of my recovery. I always tries to see the light at the end of the tunnel. I found that easier for most of my past memories were lost so all I had to gauge my life as what it is now. SO I found myself not being able to do things so I knew I had to work hard to re gain as much as I can. Most people are burdened with the memories of their past life. I couldn’t imagine…. Really! So please, just because I may not have the energy to get out of bed and do something doesn’t mean I don’t want be active or spend time with you. I don’t have the energy to adult. I often relay a fantastic story I read called “The Spoon Theory” https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ In part it explains how things you may do every day takes someone with a brain injury (this story was about Lupus) and incredible amount of energy to just function in daily life. I have no claim to this story but it is a great explanation of our levels of life that can change daily. I could wake up in the morning and by the afternoon, I may not be able to think straight or talk clearly. “I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.”

yes and I reprinted it in regular Romans :) Sorry

" taken from story "The Spoon theory" I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.”

That was so eloquently written. Over the time you have been at this site,having the privilege of watching you go through all of which you have, both good and bad, has been a teaching guide for me in recovery and understanding . I am so glad that you have finally found the cause of the pain and itching and NO I never thought you were crazy. As stroke survivors, we are blessed , or cursed, to understand what the brain can do. I have ALWAYS loved the fact that you spoke your mind. And this paragraph; " I am not a wild dog in rage but there is a river of anger that drives purposeful motivation. I can control my emotions because I expressed and dealt with and became master Queen of the deepest most powerful of them. Yet I allow myself vulnerability to cry weep over disappointing stagnations in recovery and lack of power in my life. Therefore I refuse to be bullied and engage in small power plays because those are the deadlies" is absolutely magnificent in explaining what stroke can do to a person

Susan I'm so sorry. That hits close to home when we hear something like that. I want to send you love and hope.

Some people would assume at times I share a lot of the traits as someone who is Bipolar for I tend to be riding on a roller coaster of emotions. I don’t have the extreme changes in my personality like deep lows that keep me in bed and I don’t want to assume I know those feelings but I know I’m not nor ever have been. My issues may appear like depression when in fact they are exhaustion. Mental exhaustion. On a regular-season basis I have days in which I wake up, meaning I open my eyes, around 7-9 am and I feel like I have 200lbs of weight keeping me down in bed. I may be “awake” but my mind isn’t quite ready to conquer the day and I lay in bed watching Hulu or Netflix on my tablet. I’m not hungry or thirsty and can go until Noon or 1:00pm before I even have the energy to move. Yeah, I may get up to use the bathroom but that’s a far as I can go. I can’t even begin to tell you, how many people have accused me of having depression. “Get out of bed and just try” or “You should just go out more”. Yes I agree but I can’t even begin to explain I’m not depressed. I may be sad a times but in no way am I depressed so all the positivity needed to break that cycle won’t work on me. My brain in COMPLETELY EXHAUSTED. I can’t imagine what someone with depression must be going through. I am not trying to equate my issues with what someone with true mental de-stress must feel all I can I talk about is my situation. Sure I was depressed or very upset in the beginning of my recovery. I always tries to see the light at the end of the tunnel. I found that easier for most of my past memories were lost so all I had to gauge my life as what it is now. SO I found myself not being able to do things so I knew I had to work hard to re gain as much as I can. Most people are burdened with the memories of their past life. I couldn’t imagine…. Really! So please, just because I may not have the energy to get out of bed and do something doesn’t mean I don’t want be active or spend time with you. I don’t have the energy to adult. I often relay a fantastic story I read called “The Spoon Theory” https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ In part it explains how things you may do every day takes someone with a brain injury (this story was about Lupus) and incredible amount of energy to just function in daily life. I have no claim to this story but it is a great explanation of our levels of life that can change daily. I could wake up in the morning and by the afternoon, I may not be able to think straight or talk clearly. “I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.” She wrote that explanation for everyone..

Sue, that was absolutely lovely. You explained the ebb and flow of friends. Reading isn't a strong trait of mine anymore but I was so involved with this. Thank you for sharing and caring . I want to reach through the screen and give you a hug. I'll send you a post :)

Well I have a life coach I talk with every now and then and he asked me tough questions. that make me think. Take an honest look at myself. The kicker is I spent three years in therapy to figure out why I am who I am but it was overshadowed by my stroke, then it changed to cognitive thinking to make a more positive recovery. He was asking me questions and while I was explaining my why's..you could see that I answered it happened..... A-HA. realization ... THE TRUTH became clear.We now have a better understanding of what is going on. I'm thankful however I'm in the middle of an internal battle of minds. The new me, or since the stroke, is more easy going and generally a happy positive person. However, somewhere in my brain is telling me , the old me, is holding on to certain parts of my life that causes me to struggle with confidence and other things. I just have to change my thinking and let go of the past. I've said this exact same thing before to myself and that shows you that my two brains that are arguing with each other. They say that someone who normally is outspoken or gives the illusion of confidence and unfortunately I go back into that mindset. So next time we talk, we are going to go something called NLP ( Neuro-linguistic programming)https://en.wikipedia.org/wiki/Neuro-linguistic_programming#Main_components_and_core_concepts I'm excited to change my thinking. Once I find out more I'll share :)

Pookie was sent with love in 2004 and crossed that path again in love. I'm touched with knowing there are so many happy memories

Happy Mother's day.. that was such an inspirational blog :)

I know that you are a smart cookie but I ask if this could/maybe be those around you ,as with those around you, are putting to much pressure on you? I mean this lovingly

Sweetie, I'm terribly sorry for the sleepiness. I can't even imagine going through all of what you have to go through. Can they try something else or have they already?

Eating healthy can be challenging especially when I have multiple food allergies. Lactose, a common allergy to the enzymes often found in dairy products and Soy, which is found in EVERYTHING. So I’ve learned to make my own “Buttery Spread’ which isn’t always a butter but a combination of coconut milk and millet. I could go out to buy the butter that is Lactose and Soy free but for a little tub can cost me anywhere from $4.00 to $6.00, and being on a fixed income, is too much for my wallet. I was told to eat protein bars... that sounds simple enough. However, everything has soy in it. The ingredients may not say SOY: Edamame , Miso, Natto, Shoyu, Soy (soy albumin, soy cheese, soy fiber, soy flour, soy grits, soy ice cream, soy milk, soy nuts, soy sprouts, soy yogurt) , Soya, Soybean (curd, granules), Soy protein (concentrate, hydrolyzed, isolate) , Soy sauce , Tamari, Tempeh, Textured vegetable protein (TVP) , Tofu. (Some of the foods that have these names in there I don’t eat because of sodium) And I’ve learned to read everything. Thank goodness there are cookbooks out there that cater to my allergies. True, it’s not common, but it’s out there. So my kitchen looks like a health food market. “Was I always this way?’ I started to show digestive problems with Lactose while I was pregnant with my youngest son. I didn’t like cheese but there are some foods with cheese I love to eat. It started with the usual stomach cramps but over time it started to go from pains to gas and diarrhea on top of my cramps. So from there I went to Soy milk. I still had the bloating, gas, cramps associated with lactose. It never crossed my mind for a while for I just thought it was still something to do with the lactose in my coffee or ice cream. The pain became too much for me to handle. I began to go online and research allergic reactions of soy. All of the things I’ve been dealing with was listed in front of me but with everything you read on line isn’t always true. So I started a self-test. I went to Starbucks coffee because they had Coconut Milk and I already checked the label to make sure there was no soy. I drank my usual coffee order but this time with coconut milk and something amazing happened…. NO STOMACH ISSUES. From there, I looked up all the other names for soy and began to see how many food items have it in it. Again, being on a fixed income, I had to order many foods online for finding specialty foods can be hard. Instead of always spending money all the time, I’m trying to make my own, Makes me more mindful of what goes into my mouth. Avocados, blueberries also cause me stomach issues. Which makes sense for I’m allergic to Latex. Some of the same enzymes in avocados are found in latex. Strange but true. So I can eat wood, stones and maybe grass hahahahaha