Aphasia is a crappy term for what the brain does sometimes after a brain injury and although you KNOW what you want to say, your speech comes out to listeners as word salad. It's incredibly frustrating. I only had it mildly when I was at Craig Hospital, but remember other patients having it much worse and it was SO frustrating. I have been volunteering back at Craig Hospital to get some medical experience to have more to say on my resume other than "I was a patient", and met to 2 people in the T-Zone who had had strokes (the T-Zone is a therapeutic area where you focus on playing games as strategy to get coordination back. It wasn't until after I was discharged from Craig that I saw the benefit of holding the cards in my hands, thinking about the next move, etc. as getting some of my functions back.)
At the time it was just fun times with Sandy, the OT therapist. Jill, a patient I met earlier this week, had a stroke 2 months ago, and currently has a pretty severe case of Aphasia. She said something about Shoes... and Sandy and I finally understood her to mean that she wanted to be in my shoes.. Tears welled up in my eyes. I remember that desperation. That feeling of helplessness. Of just wanting the frustration to end. Of wanting to wake up from the bad dream you currently find yourself in and be back to the way things once were. I told her that things were going to get better, but that "this" took a LOT of hard work, and I haven't gotten here overnight. It's taken 2.5 years of hard work, tears, God's intervention, and a lot of prayer. I have no idea why the Aphasia just went away. That's for a speech pathologist to figure out. There's a lot of things surrounding the stroke that I will never understand, and frankly, I am not sure I want to anymore. It happened. Knowing WHY can't do anything now. Having something to blame won't change today. I'll be on medication for the rest of my life. I'm taking care of myself and working hard to prevent anything else from happening. But I'm not letting that prevent me from living today to the fullest either. I could long or wish from things to be different, but they are not. So for now, I will pray for Jill and the other patients that I meet at the hospital that are where I was a few years ago, because I know what it is to be in the shoes, literally.
Love,
Amy Christine
Wednesday, August 31, 2011
Friday, August 26, 2011
Needing a new start and receiving compliments
Maybe even more than feeling like God might be leading me to Indianapolis is the sense that I just need a fresh start in life. Life for the last 2.5 years has been rough to say the least. I couldn't have planed it, and Colorado has come to represent some really hard times in my life unfortunately. I love the beauty of this place and the weather, but it has also come with some extremely hard heartache too. For that, I think I need a new start, somewhere that's familiar, but doesn't represent such striving and heartache. Where I can be closer to my family if I need them. I know Indy will be a LOT of work, getting a new job, church, making the friendships I have there deeper, pretty much starting over in most aspects of life... but the last few years here have been so difficult. I don't ever want to do that again. I have learned a lot and God has forged character deep within me for it, but in many ways, I feel as though I have been proving a point, and haven't seen the outcome yet. Maybe I won't for years, if ever.
This summer has been tough. I chose to stay in Denver to work on my bucket list and get a part time job to explore Colorado, but had no idea that my room would flood and my renters insurance would do nothing, would lose my computer and my computer liability would also do nothing, I went without a computer for almost 6 weeks and am now starting over on a new one but can't find my external drive where all of my old files were stored on my old computer, I'd have to switch rooms mid-summer, my part-time job would be miserable, my community would begin to not be there for me in the ways they had previously, my friendships here would seem distant as people had babies and got married, I would feel alone, switching over to Medicare health insurance would prove to be such a nightmare and no one would seem to have many answers for me, and my grand-mother just passed away. This summer since graduation has pretty much sucked, as if things before graduation were "rosy"... and I've had to learn this summer as well, how to let go of people's expectations of me- as a daughter and sister, and as a friend. I think for better or for worse, I've held up these "I have to be" expectations" that were unattainable for me and were just striving in the wrong direction and making me feel like a hamster on a wheel.
I've been called out from friends and family for my "negative attitude" when really, I just want to say in response, life has been really shitty lately. Yes, my life isn't "comfortable" and I know that makes some people squirm and not know what to do for me, when that isn't my problem. I'm learning boundaries with my counselor right now what what I can control and what I can't control... which is SO good for me to learn, even if it's a lesson that's taken me 30 years to learn. How would you respond? I don't want cliches or trite answers, and that makes SO MANY people uncomfortable. Americans aren't ok when people are hurting. We want to make it all better somehow, and when we can't, we feel we have failed them. SIT WITH ME. JUST BE WITH ME IN MY PAIN. My place was flooded and the things I thought I had in lace to protect me aren't covering me. My job stinks. I feel alone here. I've been taken advantage of by a few internet scams and career counselors in a time where I just need to get my life back together. I went from having extreme structure in my life to having almost none. My chronic pain with my headaches got a lot better for awhile but has seemed to have gotten worse in the last few weeks again. I'm back volunteering at Craig hospital, which is great, and is a reminder every time I walk in there of how FAR I have come in the last 2.5 years, where the Lord has brought me, and how He will continue to use me. Some days are just harder than others.
One thing that has really messed me up and been on my mind as of lately has been accepting and receiving compliments. It's never been something I have been good at, and especially after the stroke as I was getting abilities back, it was hard for me to hear "that's awesome that you are walking again" or "improving with X" because I couldn't SEE those daily gains, I was busy living life! I've been chatting with my friend Danny in Indianapolis about this, and he's been telling me the most wonderful things to hear, but because I can't remember (loaded word for someone with a traumatic brain injury) ever really hearing those things when I was younger from my parents, it feels weird to have them said from someone else. It's not as though I have never heard them from other people in my life that aren't important to me, and I know that my parents deeply love me, but the words come off hollow and somehow without some meaning because I can no longer recall those memories of times with my parents, and I think we all want our parents approval or validation somehow, regardless of how old we get. So right now I'm processing a lot.
Processing that I've come a long way (yesterday was 2.5 years, came and went and I didn't even realize it was the 25th until today), life;s circumstances are crappy but I'm choosing to look at the positives, like the fact that Office Depot GAVE me a credit on my old dead computer and I got to get a new one this week! WOOHOO! So things might not be all rainbows and sunshine, but I'm realizing that's ok and a part of life in this season comes with pain. I'm accepting that and trying to look for the greater good that will come out of this, even when it hurts and I hear things that are insensitive and I don't want to hear, which is pretty much hourly. I'm choosing to live for today, even when it's hard and I don't want to, knowing that there will be a purpose in it, even if I don't see it at the time. So tonight, I'm going to celebrate Myelle Swanson and her daddy Andy and tomorrow celebrate 25 years of the Downing House, and choose not to think about the other 100 things that aren't going right in life. Those things are things that I can not change or do anything about,so I need to celebrate the things that I can. And for that, I will make a little toast tomorrow at the party :)
Love,
Amy Christine
This summer has been tough. I chose to stay in Denver to work on my bucket list and get a part time job to explore Colorado, but had no idea that my room would flood and my renters insurance would do nothing, would lose my computer and my computer liability would also do nothing, I went without a computer for almost 6 weeks and am now starting over on a new one but can't find my external drive where all of my old files were stored on my old computer, I'd have to switch rooms mid-summer, my part-time job would be miserable, my community would begin to not be there for me in the ways they had previously, my friendships here would seem distant as people had babies and got married, I would feel alone, switching over to Medicare health insurance would prove to be such a nightmare and no one would seem to have many answers for me, and my grand-mother just passed away. This summer since graduation has pretty much sucked, as if things before graduation were "rosy"... and I've had to learn this summer as well, how to let go of people's expectations of me- as a daughter and sister, and as a friend. I think for better or for worse, I've held up these "I have to be" expectations" that were unattainable for me and were just striving in the wrong direction and making me feel like a hamster on a wheel.
I've been called out from friends and family for my "negative attitude" when really, I just want to say in response, life has been really shitty lately. Yes, my life isn't "comfortable" and I know that makes some people squirm and not know what to do for me, when that isn't my problem. I'm learning boundaries with my counselor right now what what I can control and what I can't control... which is SO good for me to learn, even if it's a lesson that's taken me 30 years to learn. How would you respond? I don't want cliches or trite answers, and that makes SO MANY people uncomfortable. Americans aren't ok when people are hurting. We want to make it all better somehow, and when we can't, we feel we have failed them. SIT WITH ME. JUST BE WITH ME IN MY PAIN. My place was flooded and the things I thought I had in lace to protect me aren't covering me. My job stinks. I feel alone here. I've been taken advantage of by a few internet scams and career counselors in a time where I just need to get my life back together. I went from having extreme structure in my life to having almost none. My chronic pain with my headaches got a lot better for awhile but has seemed to have gotten worse in the last few weeks again. I'm back volunteering at Craig hospital, which is great, and is a reminder every time I walk in there of how FAR I have come in the last 2.5 years, where the Lord has brought me, and how He will continue to use me. Some days are just harder than others.
One thing that has really messed me up and been on my mind as of lately has been accepting and receiving compliments. It's never been something I have been good at, and especially after the stroke as I was getting abilities back, it was hard for me to hear "that's awesome that you are walking again" or "improving with X" because I couldn't SEE those daily gains, I was busy living life! I've been chatting with my friend Danny in Indianapolis about this, and he's been telling me the most wonderful things to hear, but because I can't remember (loaded word for someone with a traumatic brain injury) ever really hearing those things when I was younger from my parents, it feels weird to have them said from someone else. It's not as though I have never heard them from other people in my life that aren't important to me, and I know that my parents deeply love me, but the words come off hollow and somehow without some meaning because I can no longer recall those memories of times with my parents, and I think we all want our parents approval or validation somehow, regardless of how old we get. So right now I'm processing a lot.
Processing that I've come a long way (yesterday was 2.5 years, came and went and I didn't even realize it was the 25th until today), life;s circumstances are crappy but I'm choosing to look at the positives, like the fact that Office Depot GAVE me a credit on my old dead computer and I got to get a new one this week! WOOHOO! So things might not be all rainbows and sunshine, but I'm realizing that's ok and a part of life in this season comes with pain. I'm accepting that and trying to look for the greater good that will come out of this, even when it hurts and I hear things that are insensitive and I don't want to hear, which is pretty much hourly. I'm choosing to live for today, even when it's hard and I don't want to, knowing that there will be a purpose in it, even if I don't see it at the time. So tonight, I'm going to celebrate Myelle Swanson and her daddy Andy and tomorrow celebrate 25 years of the Downing House, and choose not to think about the other 100 things that aren't going right in life. Those things are things that I can not change or do anything about,so I need to celebrate the things that I can. And for that, I will make a little toast tomorrow at the party :)
Love,
Amy Christine
Thursday, August 11, 2011
Contemplating the Whys
I listened to K-Love tonight on my way home from the grocery store, and a woman called in with a praise that a friend who had been diagnosed with cancer and given a 20% chance of living about two months ago is going to have one more round of radiation and then should be fine. God has answered and miraculously healed him. I welled up with tears, thankful with this woman that God has answered, but also saddened. Yesterday, I found out that a friend of a friend back in Indianapolis who had breast cancer, it migrated to her brain and she passed away two months before the doctors had "projected". I'm left contemplating the bigger why's tonight, why He chooses to answer some prayers miraculously and leave others unanswered. My story is miraculous. I can't look back and not see faithful intervention and intentionality in it. However, nothing since February of 2009 has come "easy", but rather, has cost me with blood, sweat, and LOT's of tears. To say it's not fair seems unjust and a far cry from what I really want to yell. My heart breaks for my friends losing friends to cancer, I have lost grandparents to the disease and think it's incredibly unjust. It makes no sense to me. Maybe that's the point. Maybe I'm not supposed to understand it. I would be a horrible God if I had to make those kinds of choices, of what prayers to answer and what is supposed to be "character building" in someone's life. Maybe that's why I'm here and He's there. ;) So tonight as I hurt for my friends in Indy who are hurting over losing LB and contemplating this answered prayer for the man cured of cancer... I'm left with questions of Why and what we do with pain and suffering. If it's supposed to help us become stronger people, that's great, but BE HERE and DO IT already. Come DWELL with us in this pain, because it hurts and it sucks. There are a lot of unanswerable questions as I go to sleep tonight. Put it on my list, right Jesus?
Love,
Amy Christine
Love,
Amy Christine
Tuesday, August 9, 2011
Stinking health Insurance
I was going to post about how much I have been LOVING going on outing's with former Craig Hospital outpatients simply because it's one less thing I would have to explain (by the way... 2.5 years ago, my brain exploded and that's why I'm different now). I'm just accepted for that- I've been to South Dakota camping and white water rafting with them and I've LOVED it.
However, the last day or so has been devastating to me. I'm still pretty much living off of Social Security Disability checks each month, and a few miscellaneous cleaning jobs as well. The hosting job at the country club hasn't been as fulfilling (pay wise or with my time) for me to make ends meet. This month I am automatically enrolled in Medicare because of SSDI, but the process couldn't be more confusing. I met with one of my social workers today at the hospital and bawled through our appointment together. The government has made sure that Medicare is the most confusing process out there, and for those of us living off of SSDI checks with a TBI (traumatic brain injury) it's even better. There's part A and B (Hospital and Doctors), which I am automatically enrolled for, part C which I am not but need to enroll in a Medigap policy, and then part D (Drug Coverage), which I found a policy that I liked and seemed to cover most of my medications but the policy alone would be like $70 a month and then about $117 for my monthly medications. But the policy I liked I found out was simply drug coverage and not medical, so I need to keep looking- great news! :( My social worker gave me the contact information for a guy who handles Medicare for a living so I'm hoping he has more news, because right now, things seem really hopeless! So for something I didn't even choose to have happen to me a few years ago has forever altered how I see the world and relate to it, I can't just go without health coverage; would be denied any other coverage because the stroke is considered pre-existing; I can't stay with Cobra because it was crappy, will only cover me for so long, and didn't cover much and was just something I was using until Medicare kicked in and was expensive; and don't want to just stay with original medicare because having to pay the 20% of my doctors visits and the cost of my medication would be way too ridiculous... so I seem out of options at this point. So I just cried with Victor this afternoon because I don't see any solutions to this crisis (which I guess is the definition of a crisis after all). If you have options that I'm not thinking of, let me know, but at this point, I seem out of ideas besides finding a sugar daddy (which still hasn't arrived) or getting a job with health coverage to escape all of these woes... And that's my thoughts as of right now, pretty much just centered around what to do about my health coverage until I get a real job. So leave me your thoughts that I haven't thought of, and thanks for continuing to follow along with my progress and recovery!
Love,
Amy Christine
However, the last day or so has been devastating to me. I'm still pretty much living off of Social Security Disability checks each month, and a few miscellaneous cleaning jobs as well. The hosting job at the country club hasn't been as fulfilling (pay wise or with my time) for me to make ends meet. This month I am automatically enrolled in Medicare because of SSDI, but the process couldn't be more confusing. I met with one of my social workers today at the hospital and bawled through our appointment together. The government has made sure that Medicare is the most confusing process out there, and for those of us living off of SSDI checks with a TBI (traumatic brain injury) it's even better. There's part A and B (Hospital and Doctors), which I am automatically enrolled for, part C which I am not but need to enroll in a Medigap policy, and then part D (Drug Coverage), which I found a policy that I liked and seemed to cover most of my medications but the policy alone would be like $70 a month and then about $117 for my monthly medications. But the policy I liked I found out was simply drug coverage and not medical, so I need to keep looking- great news! :( My social worker gave me the contact information for a guy who handles Medicare for a living so I'm hoping he has more news, because right now, things seem really hopeless! So for something I didn't even choose to have happen to me a few years ago has forever altered how I see the world and relate to it, I can't just go without health coverage; would be denied any other coverage because the stroke is considered pre-existing; I can't stay with Cobra because it was crappy, will only cover me for so long, and didn't cover much and was just something I was using until Medicare kicked in and was expensive; and don't want to just stay with original medicare because having to pay the 20% of my doctors visits and the cost of my medication would be way too ridiculous... so I seem out of options at this point. So I just cried with Victor this afternoon because I don't see any solutions to this crisis (which I guess is the definition of a crisis after all). If you have options that I'm not thinking of, let me know, but at this point, I seem out of ideas besides finding a sugar daddy (which still hasn't arrived) or getting a job with health coverage to escape all of these woes... And that's my thoughts as of right now, pretty much just centered around what to do about my health coverage until I get a real job. So leave me your thoughts that I haven't thought of, and thanks for continuing to follow along with my progress and recovery!
Love,
Amy Christine
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