I'm so very frustrated. It's been a very low few couple of weeks honestly, and I hate admitting it. After taking the 4th, YES, THE 4th anti-depressant that has made me suicidal in the last year. At first I was ashamed to even speak of it. But why are we so afraid to talk about mental health and suicide? They've become this taboo topic in our society because we're afraid of the ramifications. Would this be the same issue if I said I was diabetic but thought I could just do it without drugs... anywhoo. I disgress.
I know I don't play by the rules. Usual medication side effects don't really apply to me, and the things that might typically happen to someone have never worked for me. Muscle Relaxers made me have insomnia when they usually make anyone else super drowsy. I have been on SO MUCH medication in the last few years. I'm just SO TIRED of feeling like I've frustrated the medical community so they just throw more pills at me. I feel like replying back "You think I CHOSE THIS? DO YOU THINK LIVING IN CHRONIC PAIN IS FUN? I'm sorry to be a medical anomaly, but try taking more than 2 minutes in your visit with me, since I AM PAYING FOR IT, and get out of your Medical School thinking and listen to what is going on with me please!" I'm not just making this stuff up for fun. I promise that I always have pain of some sorts. I usually don't let it show because I hate talking about it. It's not something I enjoy talking about- i hate to talk about me regardless. I just don't want "to be that girl". I think being on allllll of this medication is what is keeping my pain as bad as it is. I'm just too compliant to actually object to someone in a lab coat and I take their pills because I I still have hope that the pills might DO SOMETHING for me after all. I can't go back to the original prescribing doctors, as they are back in Colorado. So I need a doctor in Indiana who IS CONFIDENT to slowly start taking me off one medication and see what happens. Not all at once. I'm tired of being an anomaly. One of the greatest things that I have heard in the last 3 years was when Dr. Fox said to me "You're not a medical anomaly. You're just a puzzle." Thank you. It was as if she gave me a new identity in all of this, because there is no user manual of "now here's how to live with a TBI" (which I may attempt someday at writing someday).Sweet freedom. I've certainly done most everything else that I was told couldn't be done after a stroke. Most people who find out that it's part of my past now are now very surprised, to which I am very grateful, and honestly never imagined would happen because I never thought that day would come WHERE YOU COULDN'T see the effects of the stroke in me. I've said that I don't want to be defined by the stroke, but I also have very select memories (without reason) from before the stroke as well,so even describing pre-stroke Amy is difficult on most days unfortunately. I'm a mixed bag and I'm becoming not afraid to admit it.
So there is this guilt of knowing that I am a miracle and but also living in chronic pain and wanting to end my life, and feeling guilty because I don't want my life to end that way either. It's a maddening cycle really. And there's not a "magic pill" to fix it and make it all better, and God hasn't healed me yet and made the pain stop, so right now, I live in tension of the life "not yet glorified". I want my glorified body SO BADLY I can taste it. A life without pain seems almost impossible to possibly imagine. So for right now, I know that as much as I hate them, I need them. I've attempted to ween off some of them, and in that process, some of my doctors have actually tried to add more pills to my routine. No, I don't need any more than what I already have. Please no. My mental health and pocket book are way too important to me to sacrifice right now. Having a voice is not something I have ever excelled in having, so when I actually use it Mr. doctor, please listen to it, and don't add medications as that just increases my frustrations with you and your vocation. ANd those are my frustrated and random thoughts for the day.
Love,
Amy Christine
Wednesday, April 4, 2012
Monday, April 2, 2012
Hard day. Again.
Life continues to be hard in Indianapolis. And I continue to be misunderstood here too for a variety of reasons. I think it's one of the reasons that I just want to pack up in the night and return back to Colorado, without even saying goodbye. No, things weren't "easy" there either, but at least I knew the trials that could maybe come. I hated being known by my stroke, having that be my legacy or how I was known, but the resources were more accessible. Now that I had a job (well, I stepped down as a therapist this morning without a back-up plan yet and moving forward is still TBD) freaks me out. I hate this place of "unknown" again. I don't sit well. Living with a TBI is SO HARD. And to find someone else with a TBI that's higher functioning and young... yeah, doesn't happen often. It's not like something you can explain to people, but because I do "look normal" now on the outside, I have to remind the people that are closest to me that... sorry, my brain doesn't play by your rules. I know you find that frustrating, but trust me, it's about 20x more frustrating to know that there used to be stuff I could easily do and now it's simply not there. That still brings me to tears.
I met with a new friend the other night with a TBI that I had met after church when my video had played at church, and as we both cried together, we both admitted that even though our brains sometimes malfunction with a headache, we still have brains and are still here by God's grace. That's a sobering thought. PRAISE GOD for even sending her my way though!? I did have a stress-induced migraine on Friday, and many people can't understand why I would walk away from the only door that God seemed to open after 4 long months. When they can't understand what it is to live with chronic pain, on social security disability, riddled with anxiety, a thorn to the medical system, and over half of what you made last year going to medical expenses of your way below poverty... well, yes, it's a hard thing to explain to others why I would walk away. My brain just can't learn the way that they were trying to train me (with videos). I still want to work with people with disabilities somehow, and loved BACA for giving me the grace and opportunity to try. They even told me that they didn't see anything within me that was anything that wouldn't be true of any new therapist (which was SO AFFIRMING). I found I have a lot more in common with those autistic kids. We both need structure. We both crave people to see us for our abilities and what we can do and not at all for our disability. Our disabilities were not our fault, and we should never be treated any different for them. Although they needed some help with life and social skills, I realized that we are a lot more alike. That's stuff I had to relearn after my stroke too. It didn't just naturally come back. Thanks to my gracious friends and family for helping me with my blunders along the way, and helping me with my little hiccups, and sorry to anyone that I offended and never got the chance to apologize to. My filter was off for a long time, and many days still it is barely hanging on.
These were also kids that the school systems couldn't work with. I was also told I wouldn't return to school. Within 6 months, I was back pursuing my master's degree. When I realize it's been 3 years since my Stroke, that's a long time, and in many other ways, it seems like yesterday. There is a lot more that my new friend is aware of that I'm not yet- of knowing that she can't face the window because the constant people passing is too distracting for her, and she wore little earplugs that I didn't notice were even in. I need to find these little tricks for myself yet. And I need the grace of the people that are around me to allow me to do those things, even when it might seem weird when I request the seat facing away from the window. I think that's the biggest thing I need here in Indiana to make me feel understood in all this as I search for a job again, just for the grace to just be. Not to be enabled, or a hand-out, but just the grace TO BE moving forward. I think that's what I'm longing for and feel like I don't have right now somehow. Life, to even get out of bed and pretend that all is OK just takes so much energy, and I just need the space & grace to not pretend for awhile if that makes any sense. So those are my thoughts today, through the tears and not really knowing what's next. I think God likes me all vulnerable like this, even though I find it crazy and asinine.
Love,
Amy Christine
I met with a new friend the other night with a TBI that I had met after church when my video had played at church, and as we both cried together, we both admitted that even though our brains sometimes malfunction with a headache, we still have brains and are still here by God's grace. That's a sobering thought. PRAISE GOD for even sending her my way though!? I did have a stress-induced migraine on Friday, and many people can't understand why I would walk away from the only door that God seemed to open after 4 long months. When they can't understand what it is to live with chronic pain, on social security disability, riddled with anxiety, a thorn to the medical system, and over half of what you made last year going to medical expenses of your way below poverty... well, yes, it's a hard thing to explain to others why I would walk away. My brain just can't learn the way that they were trying to train me (with videos). I still want to work with people with disabilities somehow, and loved BACA for giving me the grace and opportunity to try. They even told me that they didn't see anything within me that was anything that wouldn't be true of any new therapist (which was SO AFFIRMING). I found I have a lot more in common with those autistic kids. We both need structure. We both crave people to see us for our abilities and what we can do and not at all for our disability. Our disabilities were not our fault, and we should never be treated any different for them. Although they needed some help with life and social skills, I realized that we are a lot more alike. That's stuff I had to relearn after my stroke too. It didn't just naturally come back. Thanks to my gracious friends and family for helping me with my blunders along the way, and helping me with my little hiccups, and sorry to anyone that I offended and never got the chance to apologize to. My filter was off for a long time, and many days still it is barely hanging on.
These were also kids that the school systems couldn't work with. I was also told I wouldn't return to school. Within 6 months, I was back pursuing my master's degree. When I realize it's been 3 years since my Stroke, that's a long time, and in many other ways, it seems like yesterday. There is a lot more that my new friend is aware of that I'm not yet- of knowing that she can't face the window because the constant people passing is too distracting for her, and she wore little earplugs that I didn't notice were even in. I need to find these little tricks for myself yet. And I need the grace of the people that are around me to allow me to do those things, even when it might seem weird when I request the seat facing away from the window. I think that's the biggest thing I need here in Indiana to make me feel understood in all this as I search for a job again, just for the grace to just be. Not to be enabled, or a hand-out, but just the grace TO BE moving forward. I think that's what I'm longing for and feel like I don't have right now somehow. Life, to even get out of bed and pretend that all is OK just takes so much energy, and I just need the space & grace to not pretend for awhile if that makes any sense. So those are my thoughts today, through the tears and not really knowing what's next. I think God likes me all vulnerable like this, even though I find it crazy and asinine.
Love,
Amy Christine
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