Today was the 1st of many BIG, hopefully very informative appointments to come in the next few weeks. This morning I had an appointment with a Neuro-ophthalmologist. My neurologist didn't think I needed to see one, but I felt that I needed to have a neurologist whose specializes in eyes check and give us confirmation on how my eyes were doing.
I was very impressed with everyone we met today. I had a visual field test that took a long time and was hard for me and the technician was very patient and gave me breaks as needed so that I could give my eyes and neck a break.
My neurologist seems to minimize everything from symptoms to concerns and it really bothers me. Yes there are many others who have had way worse strokes, but I had one too and for us this is a big thing.
No one made me feel that way today. No one minimized what I had been through. No one told me I shouldn't be there. Instead they looked at my MRI's and read my file before they came in to see me. They knew I had been through a big event and that I was there for a good reason. They were grateful that I was getting my eyes looked at.
Thankfully we got all good news!! The best thing they told us was that there's no lasting damage from the stroke!!! They were very interested in the results from the visual field test. The test showed that I have NO visual gaps. The told us that they were very surprised that I have no visual problems from the stroke because I had multiple little strokes in my optical lobe.
The 1st symptom after my stroke was a black spot with no vision and red & green squiggly lines in a horse shoe shape. This sounded absolutely normal for where my stoke was. They made me feel normal in my symptoms and concerns. They also said it was normal to see the visual disturbances on the left side while I had right side weakness, and that it was probably in both eyes and not just my left eye. They asked about tracking issues and testing my eyes separately right after the stroke, but I honestly couldn't remember either of them. I told them I was so stressed that I had to have Valium in the ER. The doctor told me he probably would have had needed some himself too. That made me feel like I wasn't going crazy with my feelings.
I was able to ask some other questions about my eyes. I told them I have black and white static all the time. It's called 'visual snow' and there is nothing I can do about it. It doesn't cause any problems, it's just bothersome. They told us that they see visual snow in a lot of migraine suffers like me. They brought up a website that simulated what someone with visual snow sees. I describe is as static on a tv set. Sometimes it's worse then other times. I've had it for as long as I can remember, so I've just learned to live with it.
I also have visual floaters. We didn't talk much about them, but they are also harmless and something I just have to deal with. I see them mostly in bright lights, and especially in the bright sun.
They told us my optical nerve and muscles in my eyes looks great. I have no signs of early cataracts or macular degenerative disease which I've been told runs in my moms side of the family.
We talk about my photo sensitivity or extreme sensitivity to light. They turned on the florescent lights and I had to close my eyes. I was reassured that after brain trauma that photo sensitivity is common and will get better with time. We talked about what I already do to lesson the light hurting my eyes. I wear sunglasses and hats alot of the time. I don't use overhead lights when I can avoid them, but use softer indirect lights. He told me that doing things in the dark will not make my eyes worse. If I need to read in a darker room to go ahead and do it without worry of making my eyes worse. That's a good thing because the darker the better right now.
Since the doctor was also a neurologist he prescribed me a medicine that I'll take every night before bed that is suppose to stop me from getting so many headaches. I see the doctors at the headache clinic on May 9th, and this way we can have 1 of the many different types of medicines tested out before the appointment. Also one of the side effects of this medicine is that It'll help me sleep better. A big positive for me right now!
I'm going to go see another ophthalmologist that specialized in lenses. They can test me and see what color light I am most sensitive to, and I can get sunglasses made that will stop the light wave from bothering me so much. They'll hopefully be even better for me then my polarized glasses. I'm excited to try to lesson my sensitivity to light.
I have been so impressed with almost every doctor & nurse at the University of Iowa Hospital. I had always just gone there for specialists and done everything else through Mercy hospital affiliated doctors. I look back and see the blessings from not being able to get into my regular doctors office and needing to receive care at the University hospital instead last October. Since all my information is on my file there, any new doctor I see there knows my history and takes my concerns seriously from the beginning. I'm grateful I was established with my care there before my stroke happened. It's made all the appointments so much easier.
Monday, April 21, 2014
Thursday, April 3, 2014
Learning to love my own two feet
Today marks 8 weeks since my artery dissection and stroke. 95% of my physical symptoms are no longer visible. I'm still dealing with hyper-sensitivity to light and my left eye seems blurrier then before. This especially happens in the evening as I get tired. I also find when I get stressed or really tired that my right side weakness resurfaces.
This past week I've pushed myself to do some pretty big things for me. I drove myself to the doctor, then to the music store. I've been making dinner a few nights and have been on my own with the kids for a few weeks now. I drove the boys home from baseball practice, grandma drove there since it was at 5:30 and the roads were busier. Today I went to the grocery store (a smaller less crowded one) on my own then picked Rebecca and her buddy up from preschool and drove Ammon to Taekwondo this afternoon.
This past week I've pushed myself to do some pretty big things for me. I drove myself to the doctor, then to the music store. I've been making dinner a few nights and have been on my own with the kids for a few weeks now. I drove the boys home from baseball practice, grandma drove there since it was at 5:30 and the roads were busier. Today I went to the grocery store (a smaller less crowded one) on my own then picked Rebecca and her buddy up from preschool and drove Ammon to Taekwondo this afternoon.
All these things have stretched and challenged me. Unfortunately after each time I've pushed myself I've suffered some sort of effect from them. I've gotten nauseous (even driving sometimes), dizzy, headaches or fatigue. I keep pushing myself to do more and get back into my normal routine. I'm taking small steps everyday and some of these steps are harder then others. Every few days I have to take the day off and just give myself extra rest and recovery time. I have a whopper of a headache tonight from doing so much today, but thankfully the house is quiet and I can rest.
I saw my regular doctor this week. We had the normal talk about how I've been feeling, how the medicine doses are, what I need from her and talked about my homework. One thing we talked about was church and my faith. I'm struggling to know what I believe right now. Yes I still believe in Jesus Christ and Heavenly Father. I know they love me and answer prayers. What I'm struggling with is understanding how someone (Heavenly Father) who loves me so much keep allowing such hard things to keep happening to us.
When I look back over the years since I 1st dealt with postpartum depression I realized I've been burying my struggles. When Ammon got sick, I was silently struggling. Just over a year later when Simeon got leukemia I again silently struggled. They were struggles that I hid from not just others but also myself. It just seems that every new struggle that's come my way I've buried it with the thinking maybe of 'out of sight, out of mind'. Having this trial happened directly to me has unearthed all those feelings I've been hiding for years. Or you could say my stroke was the straw that broken the camels back, or the drop that over flowed my bucket, or the blow that knocked the tree down. Anyway you want to put it I've had enough. My heart has had enough. My body has had enough. My spirit has had enough. I've had enough and I'm tired. I'm tired of hiding from the pain. I'm tired of hiding behind a smile. I'm tired of acting like everything is fine. I'm tired of saying I understand why these trails keep coming our way. I'm tired of thinking that I'm strong. Because you know what-I'm not strong. Not always. I fall down and don't get right back up. I cry and the tears don't stop. I hurt and I can't stop the pain. Right now I have a hole in me right where my faith that this trial is happening for good reasons, and I'll be made stronger because of it, and I'm learning some great and marvelous lessons is. I'm not sure of the why or how comes right now. I know that I'm frustrated, and scared and not sure where to turn.
When I look back over the years since I 1st dealt with postpartum depression I realized I've been burying my struggles. When Ammon got sick, I was silently struggling. Just over a year later when Simeon got leukemia I again silently struggled. They were struggles that I hid from not just others but also myself. It just seems that every new struggle that's come my way I've buried it with the thinking maybe of 'out of sight, out of mind'. Having this trial happened directly to me has unearthed all those feelings I've been hiding for years. Or you could say my stroke was the straw that broken the camels back, or the drop that over flowed my bucket, or the blow that knocked the tree down. Anyway you want to put it I've had enough. My heart has had enough. My body has had enough. My spirit has had enough. I've had enough and I'm tired. I'm tired of hiding from the pain. I'm tired of hiding behind a smile. I'm tired of acting like everything is fine. I'm tired of saying I understand why these trails keep coming our way. I'm tired of thinking that I'm strong. Because you know what-I'm not strong. Not always. I fall down and don't get right back up. I cry and the tears don't stop. I hurt and I can't stop the pain. Right now I have a hole in me right where my faith that this trial is happening for good reasons, and I'll be made stronger because of it, and I'm learning some great and marvelous lessons is. I'm not sure of the why or how comes right now. I know that I'm frustrated, and scared and not sure where to turn.
On numerous occasions I've asked Johann if we could just move our lives to Florida. My thinking is if we move somewhere different and somewhere warm (I'm a California girl-not a naive Iowan) then our struggles and stresses would disappear. Of course he's always the down to earth kind of guy and tells me that moving our lives to Florida won't make the stresses of life just disappear. RATS! Double RATS!!
A few weeks back I came upon a the blog The Moments We Stand and I was instantly drawn to it. At first I was drawn to the tragic events that led Ashlee to start her blog, then the love story of her and Emmett captured me, but then I was in complete awe of her faith and strength. One of her blog entries she talked about wanting to move and that moving would get them away from all the sad memories. She went on to say: "There is a part of the movie Cloudy with a Chance of Meatballs where the main character, Flint, has sprayed his invention called 'Spray on shoes' on to his feet and he realizes that he is never going to be able to take it off. He describes his frustration, "I wanted to run away that day... but you can't run away from your own feet!" "
Now when I feel like running away from the stresses or frustrations in my life I say "I can't run away from my own feet!" It reminds me that even moving to Florida and enjoying the sun, sand & warmth I'd still have the everyday stresses. But hey maybe I'd be warmer while figuring them out! Since moving to the sun, warmth and sand of Florida (or another warm coastal place) isn't going to magically make life seem easier, I've got to figure this out on my own.
Today my therapist and I talked about why I struggle with going from being so happy to low as low can be in 60 seconds flat. We talked about the foundation of a person or better know as 'The Hierarchy of Needs'. There are 5 levels -
Goals
Self-esteem
Love/Belonging
Safety/Security
Survival
Look at it from the bottom up like a stepping stair pyramid with survival as the most basic block.
In my "survival" foundation brick I'm doing alright, except with sleep. Sleep and I don't seem to get along-it's been years of a love hate relationship with us! Right now I don't want to go to sleep and when I finally exhaust myself to the point I can't keep my eyes open any longer, I still lay there awake with my mind running full steam ahead, then I wake up the next morning tired and I repeat the cycle day in and day out.
It's in my "safety/security" level that I have some major cracks and holes. Think of it as walking on a cracked & potholed street. (For all you Iowa folks-think of the streets right now after our long, frigid winter.) If your well rested and paying attention you can get yourself across the street without tripping over a crack or falling into a hole. Now try it with your mind tired, occupied with stress, worry, anger, fear & questions. It's harder and you probably stumbled or even fell into a pothole. That's me. I'm full of cracks & potholes and I have so much going on in my mind that I can't pay attention and when I least expect it I trip or fall into a hole and get stuck back into the fright, flight or freeze mode.
So in real life what does tripping or falling look like-impatience with the kids, getting upset over a very small meaningless thing, taking something someone said too personal, having a minor symptom and making it into something too big, worry, fear, anger about my situation, frustration, walking through the grocery store like a rock with legs wearing sunglasses because it's too overwhelming. The big one the other night-1 kid rudely seeking to do something they disliked the answer to, later 2 kids fighting, dinner cooking, a messy kitchen, and I was tired and had already done too much that day. I had a need for sleep and quietness that wasn't met and I fell flat on my face-hard, and it hurt. I didn't fall down-not really-I yelled at the kids, told them dinner was off, sent them to their beds, ran to my room, locked the door and sobbed. Simeon made dinner, and Johann came home & took care of the kids.
I'm so caught up in my own worried mind that I'm not looking ahead of myself and I keep stumbling & falling. Until I can get past my fears and safety issues and can look up as I walk through life I'll have these cracks and holes that trip me and cause me to fall down. A small part of my struggles are starting to make sense to me.
Right now I need to get more sleep, exercise, get a massage and learn to love my feet again and to find a way to be happy with where they're at. The goal being that if I learn to love my feet more-or rather embrace our challenges and find a way to cope with them that is healthy and positive I will hopefully be in a better place emotional, mentally, spiritually & physically and better able to handle lives challenges.
A few weeks back I came upon a the blog The Moments We Stand and I was instantly drawn to it. At first I was drawn to the tragic events that led Ashlee to start her blog, then the love story of her and Emmett captured me, but then I was in complete awe of her faith and strength. One of her blog entries she talked about wanting to move and that moving would get them away from all the sad memories. She went on to say: "There is a part of the movie Cloudy with a Chance of Meatballs where the main character, Flint, has sprayed his invention called 'Spray on shoes' on to his feet and he realizes that he is never going to be able to take it off. He describes his frustration, "I wanted to run away that day... but you can't run away from your own feet!" "
Now when I feel like running away from the stresses or frustrations in my life I say "I can't run away from my own feet!" It reminds me that even moving to Florida and enjoying the sun, sand & warmth I'd still have the everyday stresses. But hey maybe I'd be warmer while figuring them out! Since moving to the sun, warmth and sand of Florida (or another warm coastal place) isn't going to magically make life seem easier, I've got to figure this out on my own.
Today my therapist and I talked about why I struggle with going from being so happy to low as low can be in 60 seconds flat. We talked about the foundation of a person or better know as 'The Hierarchy of Needs'. There are 5 levels -
Goals
Self-esteem
Love/Belonging
Safety/Security
Survival
Look at it from the bottom up like a stepping stair pyramid with survival as the most basic block.
In my "survival" foundation brick I'm doing alright, except with sleep. Sleep and I don't seem to get along-it's been years of a love hate relationship with us! Right now I don't want to go to sleep and when I finally exhaust myself to the point I can't keep my eyes open any longer, I still lay there awake with my mind running full steam ahead, then I wake up the next morning tired and I repeat the cycle day in and day out.
It's in my "safety/security" level that I have some major cracks and holes. Think of it as walking on a cracked & potholed street. (For all you Iowa folks-think of the streets right now after our long, frigid winter.) If your well rested and paying attention you can get yourself across the street without tripping over a crack or falling into a hole. Now try it with your mind tired, occupied with stress, worry, anger, fear & questions. It's harder and you probably stumbled or even fell into a pothole. That's me. I'm full of cracks & potholes and I have so much going on in my mind that I can't pay attention and when I least expect it I trip or fall into a hole and get stuck back into the fright, flight or freeze mode.
So in real life what does tripping or falling look like-impatience with the kids, getting upset over a very small meaningless thing, taking something someone said too personal, having a minor symptom and making it into something too big, worry, fear, anger about my situation, frustration, walking through the grocery store like a rock with legs wearing sunglasses because it's too overwhelming. The big one the other night-1 kid rudely seeking to do something they disliked the answer to, later 2 kids fighting, dinner cooking, a messy kitchen, and I was tired and had already done too much that day. I had a need for sleep and quietness that wasn't met and I fell flat on my face-hard, and it hurt. I didn't fall down-not really-I yelled at the kids, told them dinner was off, sent them to their beds, ran to my room, locked the door and sobbed. Simeon made dinner, and Johann came home & took care of the kids.
I'm so caught up in my own worried mind that I'm not looking ahead of myself and I keep stumbling & falling. Until I can get past my fears and safety issues and can look up as I walk through life I'll have these cracks and holes that trip me and cause me to fall down. A small part of my struggles are starting to make sense to me.
Right now I need to get more sleep, exercise, get a massage and learn to love my feet again and to find a way to be happy with where they're at. The goal being that if I learn to love my feet more-or rather embrace our challenges and find a way to cope with them that is healthy and positive I will hopefully be in a better place emotional, mentally, spiritually & physically and better able to handle lives challenges.
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