Tina's hope-filled PTSD journey
Donation protected
Hi there. For those unfamiliar with my story, here's the SUPER-short version in just the paragraph below—quickly introducing you to my life's recent struggle:
I am having daily PTSD trauma reactions that manifest in the way of Psychogenic NonEpileptic Seizures (PNES)—as a result of past abuse trauma that has been blocked from my mind. These seizures can take over in a second's time and cycle all day, and can be in the form of freezing, flailing, collapsing or thrashing. I can't even sit or stand reliably, so can therefore also not drive (obviously), go outside unchaperoned, nor care for my young children (the most heartbreaking of all). Everything about my life is chaotic right now and I need help. We have amazing friends and family providing other very important forms of support like prayer, rides and meals—the specific help needed via this site is of course financial help; specifically to help provide for either:
1) admission into an intensive 45-day inpatient trauma-recovery center
(www.themeadows.com) or;
2) specialty therapies and continuing daycare coverage while I participate in long-term outpatient treatment (could take several years). Below are details explaining my journey and how we've gotten to this place of sudden urgency. Thank you for your interest...I appreciate it and you. :)
My Red Sea (a seeming impasse) Story
Last week, (while 'stuck'/frozen in the truck at Costco, unable to participate in even the basic familial necessity-things like grocery shopping) I was crying out to God that I just didn't know if I had any fight left. Please understand that during these episodes my perspective is not realistic. Obviously, now, with my brain function in-tact at the moment, I know better. But regardless, He answered my cry very personally in that moment by giving me an admonishing sense of "Let ME be your fight". Then the next day during my bible study; while researching 'fight' I found Exodus 14: 13-14 "Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Lord will fight for you; you need only to be still."
So, what He challenged me with through those verses (and a sermon I found online) is to ask myself "What fear is He wanting me to face and not run away from?" Very, very much like the Israelites up against the Red Sea, I have had the same "what the heck?" lame, apathetic attitude. But God led them down that out-of-the-way path on purpose so that they could not turn back and revert to whatever's easiest/known/comfortable. And to answer "what fear does He want me to face?", the applicable answer for me now would be that I'm afraid of feeling useless forever and not getting to be an active part of the blessings God's given me—my children, my husband, ministry, friends—if these seizures don't stop and allow me to regain control over my mind and body. The fear caused by these seizures are my Red Sea obstacle.
And like Moses, I need (and want to) to raise my hands strongly and walk forward in faith through what seems to be impossible. God encouraged me using the Exodus scripture that only His perspective will allow me to see that I'm NOT at an impasse. But like the Israelites, some requirements to keep that perspective will be that:
1. I must not be afraid (reject fear)
2. I must stand firm (despite my fears)
3. I must be still (don't be desperate; stop and focus)
4. I must move on with my life—pray, but not only pray...move FORWARD...be proactive!
O man. I'm trying. But during the seizures I AM afraid; I CANNOT stand firm (unless frozen there, ha); I AM absolutely desperate and cannot focus to save my life; and my most wanted desire IS to move on with my life. So we're praying AND researching the how of moving forward.
Moving forward is where this site and fundraising comes in, friends. Just practically speaking, in order for me to have any success enacting all four of the above points, my brain needs some re-training of it's own, since the source of my problem is a subconscious issue of which we are not even sure exactly what we're dealing with, directly.
The specifics as to that are below...my entire story as of the last month (it's the same story most of you have already read on CaringBridge). If you've read that already you can stop reading...
....mmm, here ;) almost. I just wanted to also let everyone know that we are indeed blessed and thankful to have such a wonderfully supportive family (immediate, extended & church) and friends—which extends even into friends of friends of friends too. It's amazing. Thank you so, SO much for your prayers, emotional support and if you are able, now for your financial support to help get me to a place of healing and a return to functionality again. My family thanks you too :)
__________________________________
Below are the details of the escalating seizure-types, leading up to this last week's need to make an urgent decision (same info as my most recent CB post)
So the seizures we've been investigating over the last couple of years have been escalating drastically since my last CaringBridge post a month ago, but have also become especially intense over the last two weeks. Everything about me (body and mind) is completely out of control. The 'good' news is that we believe we are on the right track as far as a treatment plan. The most likely 'originating-cause' is that there are possibly additional traumatic experiences from my childhood or, details about the known experiences that my mind has blocked out completely. Some fairly recent events (over the past couple of years) seem to have somehow triggered the release of those blocked-out memories—to which my subconscious mind still balks at and is unequipped/unprepared/unwilling to appropriately deal with. Nor does my body yet know how to respond appropriately, so the result for me is both physical and mental utter chaos. The resulting 'seizures' or 'episodes' represent trauma-induced (animal-like) fight, flight or freeze responses to danger, all of which I have. The thrashing 'fight' ones basically look like re-enactments of nightmarish events, and are dangerous to me and anyone around me. Hate hate hate to admit that—but that is why I'm asking for help.
The PTSD startle-reaction side of what's going on is that my subconscious takes issue with unknown trigger sources and interprets normally-insignificant things such as beeps, horns, flashing/bright lights, toilets running, whatever, as dangerous...and suddenly I'm unwillingly transported back to whatever unknown horrible thing/s that happened to me and my body reacts with whichever of those protective fight, flight or freeze responses it chooses, with no input from conscious-me. This does not bode well for living any normal semblance of life. So. I've come to accept that I need some serious help quickly, as in an in-patient trauma treatment center asap (similar to The Meadows in Wickenburg, AZ)—which can treat in 45 days what could take me several years to remedy with just weekly PTSD-therapy sessions (would be the same basic therapies used, just a much slower process). But here's the thing...and it's a BIG thing (in our world anyway)...The Meadows would cost us $44,000 for 45 days of intensive in-patient trauma recovery therapy. I can only even be admitted to a program like that though if I can make it through the sessions without flailing around on the floor in the middle of treatments. Right now I can't. Every day this week has been a roller coaster of long, cycling seizures that look more like I'm a horizontal tornado on the floor. Up to this point, none of the medications have made enough of a difference to even bother with...which unfortunately makes sense, because none of the doctors so far have any idea what they're even trying to treat; it's fully a guessing game—a game I'm not fond of playing without actual benefit :( Our plan as of today is to wait until this coming Wed when I meet with a new therapist (Dr. Hager) who specializes in Somatic Experiencing and hopefully she will have ideas as to whether there is a medication that can help stabilize me through treatment or if it's just better to stay completely medication-free. I've learned from three new sources that given my reaction to the EMDR therapy (it induced seizures and got us nowhere), that that means I'm not yet ready for it and need further in-depth preparatory therapy....which is what the Somatic Experiencing is, along with NeuroFeedback (I'm waiting for callbacks from those guys).
So given my current instability, we've enrolled Evan and Olivia in preschool/K/daycare primarily for their safety, as I can't give them the care they need in this thrashing-seizure-escalation stage; nor can I with "just" the frozen versions anymore because they too have worsened—as in I often get NO heads up now. A year ago I would get 15-20 minutes 'heads up' before they started so I could go sit or lay down in time, but now that timeframe has shortened progressively to nothing. Squat. Sometimes not even a second. I newly find myself frozen in standing positions now, or gripping onto a door frame mentally begging to not fall plank downward and knock myself out. Or even essentially upside down, as in, I've gotten thrown forward at the waist while standing and can't get back up so am essentially frozen with my head hanging upside down. NONE of which do we want the kids to see or feel responsible for or even remember as part of their childhood. But we can only afford five more weeks of it (and by 'afford' I mean, go into unwanted debt on a credit card with a very small limit), unless we apply for more credit somewhere/how. This is additionally concerning.
I realize how shocking and horrible this all must sound to some of you, but if I don't include the actual reality-based details of it all, you may not understand why we're making some of the decisions we are having to make...and I know I would want to understand if it was you going through something like this...
I know I'm taking a relational risk by admitting all this publicly, and believe me, I would much rather keep it all to myself...but we are admittedly and deeply desperate for help. Any personal pride has long left the building and necessity/safety rules now. We still hope that God will use this crazy experience to help someone/let me relate to someone in the future, but for now, in our lives He is choosing not to heal it quickly...so it looks to be a longer process of healing. It's already been over two years we've been dealing with all of this (sidenote: digestive issues turn out to be part of PTSD symptoms too...hmmm), and now it basically boils down to, is the remaining process (as far as we're aware of) going to take several years or 45 days? I obviously would vote for the latter. I'm begging and desperate for the latter. Unless a medication can get me through any length of these therapies, I'm truthfully not sure how much more of this mental anguish I can handle. The limit of what I can handle is seriously being challenged right now. Please pray that if no medication can help get me through, that God will replace medication with grace and just allow me the ability to do the work that's required that will effectively let me be part of this life again with any degree of purpose. In all reality, if one of those doesn't happen so that I can participate in either of the lengths of treatment plans, I will end up having to be admitted to a general psych ward that has no healing therapies, just sedation and straps, which will be a huge waste of time, money and me. Or Matt will have to quit work to take care of the me and the kids. No bueno all around.
IF we are enabled to get one of these treatment plans started asap, we are indeed still planning/hoping to move to South Carolina sooner than later (and eventually transition fully into the missionary calling)—with the primary reason of moving still being to reduce the cost of living so there aren't so many continual things that we're never able to afford. Plus, we need to be able to rent an actual house with a yard since I can't drive nor even step foot outside our door without a protective chaperone guarding against stairs/concrete/etc in case I collapse. A yard would do me and the kids an enormous favor as far as mental and physical freedom, especially if we're stuck at home for a couple therapeutic years; a yard would help alleviate that stressor tremendously—and we just can't afford that or anything else out here. I realize that 'a yard' might sound kind of trivial to some, but for us, especially with our particularly-trapped circumstances, some sort of outdoor "safe space" is an absolute necessity. I need some sun and some fresh, quiet air, in a big bad way—without the 24-hr freeway noise and the "hey kiddos, don't ever do anything but tiptoe quietly" upstairs stressors we currently have in our condo. Ha.
So, though we are on the strictest of budgets and The Meadows' 45-day fee is actually more than our yearly salary, we're stepping out to ask if there's possibly a group of people who maybe aren't on as strict a budget who'd be gracious and willing to help us raise a large portion of the funds to either help toward the 45-day plan (400people@$100ea; 200people@$200ea; 20people@$2,000ea—I know it all just sounds like too much to ask), or alternatively, to help off-set costs of continuing daycare until I'm stable or the kids are in school if we go down the 'several years of therapy' road instead (some that are expensive and not covered by insurance). No matter what, there are HUGE monetary obstacles in our lives that we simply cannot hurdle on our own. We may qualify for the financing offered at The Meadows, but I can't even imagine what the monthly payment would be to pay off $44K. (another sidenote: at first I thought the $44K sounded so incredibly high, but then I remembered what my 3-day stay at UCSD cost with NO specialty therapies, just sitting in a bed, and 45 days there would have cost $130,000+...so I guess it's not as outrageous as it initially sounds?! And way more worth the money). We would be willing to take on the financing loan to begin with, just to get me in and started, but we would need help paying it off sooner than later, especially on a soon-to-be missionary budget. We could also wait until we get to SC to start in a different treatment center or long-term plan if that's a better plan—we're praying through all the options right now—but in the meantime I'm doing everything my body will allow me to do during the day to start heading toward healing, but it's seriously a second-by-second life I live and I can't be relied upon to responsibly commit to anything right now. We will let you know when the solid direction is revealed. God will be my ultimate healer, in His time and in His ways—I just don't know when or what those will be and in the meantime (especially as a mother) I want to prepare wisely and protectively for the unknown as best I can. My faith in His purposes is still strong (though admittedly challenged and not at all understood) but I do entirely still trust Him and His ultimate plan and look forward to seeing what it is. I don't know what the glory will look like that comes out of this, but it's His regardless. Love Him. Hate this. That's nothing new...He knows how I feel about it...I miss the life I love.
I love and appreciate all of you tremendously for your care and emotional investment into our lives. Please pray for Matt and the kids also, as this has obviously been quite an adjustment—they all are rockstars though and have thus far handled everything way better than I have. They're awesome. I am so in love with my family—I just really want to be a functional part of it again. I totally miss serving...and bible studies...and girl's nights out...and investing into other's lives like crazy too...but those most-cherished roles of wife and mommy are hard to top. I know you understand...
So, I thank you all,
Love you,
Tina
I am having daily PTSD trauma reactions that manifest in the way of Psychogenic NonEpileptic Seizures (PNES)—as a result of past abuse trauma that has been blocked from my mind. These seizures can take over in a second's time and cycle all day, and can be in the form of freezing, flailing, collapsing or thrashing. I can't even sit or stand reliably, so can therefore also not drive (obviously), go outside unchaperoned, nor care for my young children (the most heartbreaking of all). Everything about my life is chaotic right now and I need help. We have amazing friends and family providing other very important forms of support like prayer, rides and meals—the specific help needed via this site is of course financial help; specifically to help provide for either:
1) admission into an intensive 45-day inpatient trauma-recovery center
(www.themeadows.com) or;
2) specialty therapies and continuing daycare coverage while I participate in long-term outpatient treatment (could take several years). Below are details explaining my journey and how we've gotten to this place of sudden urgency. Thank you for your interest...I appreciate it and you. :)
My Red Sea (a seeming impasse) Story
Last week, (while 'stuck'/frozen in the truck at Costco, unable to participate in even the basic familial necessity-things like grocery shopping) I was crying out to God that I just didn't know if I had any fight left. Please understand that during these episodes my perspective is not realistic. Obviously, now, with my brain function in-tact at the moment, I know better. But regardless, He answered my cry very personally in that moment by giving me an admonishing sense of "Let ME be your fight". Then the next day during my bible study; while researching 'fight' I found Exodus 14: 13-14 "Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Lord will fight for you; you need only to be still."
So, what He challenged me with through those verses (and a sermon I found online) is to ask myself "What fear is He wanting me to face and not run away from?" Very, very much like the Israelites up against the Red Sea, I have had the same "what the heck?" lame, apathetic attitude. But God led them down that out-of-the-way path on purpose so that they could not turn back and revert to whatever's easiest/known/comfortable. And to answer "what fear does He want me to face?", the applicable answer for me now would be that I'm afraid of feeling useless forever and not getting to be an active part of the blessings God's given me—my children, my husband, ministry, friends—if these seizures don't stop and allow me to regain control over my mind and body. The fear caused by these seizures are my Red Sea obstacle.
And like Moses, I need (and want to) to raise my hands strongly and walk forward in faith through what seems to be impossible. God encouraged me using the Exodus scripture that only His perspective will allow me to see that I'm NOT at an impasse. But like the Israelites, some requirements to keep that perspective will be that:
1. I must not be afraid (reject fear)
2. I must stand firm (despite my fears)
3. I must be still (don't be desperate; stop and focus)
4. I must move on with my life—pray, but not only pray...move FORWARD...be proactive!
O man. I'm trying. But during the seizures I AM afraid; I CANNOT stand firm (unless frozen there, ha); I AM absolutely desperate and cannot focus to save my life; and my most wanted desire IS to move on with my life. So we're praying AND researching the how of moving forward.
Moving forward is where this site and fundraising comes in, friends. Just practically speaking, in order for me to have any success enacting all four of the above points, my brain needs some re-training of it's own, since the source of my problem is a subconscious issue of which we are not even sure exactly what we're dealing with, directly.
The specifics as to that are below...my entire story as of the last month (it's the same story most of you have already read on CaringBridge). If you've read that already you can stop reading...
....mmm, here ;) almost. I just wanted to also let everyone know that we are indeed blessed and thankful to have such a wonderfully supportive family (immediate, extended & church) and friends—which extends even into friends of friends of friends too. It's amazing. Thank you so, SO much for your prayers, emotional support and if you are able, now for your financial support to help get me to a place of healing and a return to functionality again. My family thanks you too :)
__________________________________
Below are the details of the escalating seizure-types, leading up to this last week's need to make an urgent decision (same info as my most recent CB post)
So the seizures we've been investigating over the last couple of years have been escalating drastically since my last CaringBridge post a month ago, but have also become especially intense over the last two weeks. Everything about me (body and mind) is completely out of control. The 'good' news is that we believe we are on the right track as far as a treatment plan. The most likely 'originating-cause' is that there are possibly additional traumatic experiences from my childhood or, details about the known experiences that my mind has blocked out completely. Some fairly recent events (over the past couple of years) seem to have somehow triggered the release of those blocked-out memories—to which my subconscious mind still balks at and is unequipped/unprepared/unwilling to appropriately deal with. Nor does my body yet know how to respond appropriately, so the result for me is both physical and mental utter chaos. The resulting 'seizures' or 'episodes' represent trauma-induced (animal-like) fight, flight or freeze responses to danger, all of which I have. The thrashing 'fight' ones basically look like re-enactments of nightmarish events, and are dangerous to me and anyone around me. Hate hate hate to admit that—but that is why I'm asking for help.
The PTSD startle-reaction side of what's going on is that my subconscious takes issue with unknown trigger sources and interprets normally-insignificant things such as beeps, horns, flashing/bright lights, toilets running, whatever, as dangerous...and suddenly I'm unwillingly transported back to whatever unknown horrible thing/s that happened to me and my body reacts with whichever of those protective fight, flight or freeze responses it chooses, with no input from conscious-me. This does not bode well for living any normal semblance of life. So. I've come to accept that I need some serious help quickly, as in an in-patient trauma treatment center asap (similar to The Meadows in Wickenburg, AZ)—which can treat in 45 days what could take me several years to remedy with just weekly PTSD-therapy sessions (would be the same basic therapies used, just a much slower process). But here's the thing...and it's a BIG thing (in our world anyway)...The Meadows would cost us $44,000 for 45 days of intensive in-patient trauma recovery therapy. I can only even be admitted to a program like that though if I can make it through the sessions without flailing around on the floor in the middle of treatments. Right now I can't. Every day this week has been a roller coaster of long, cycling seizures that look more like I'm a horizontal tornado on the floor. Up to this point, none of the medications have made enough of a difference to even bother with...which unfortunately makes sense, because none of the doctors so far have any idea what they're even trying to treat; it's fully a guessing game—a game I'm not fond of playing without actual benefit :( Our plan as of today is to wait until this coming Wed when I meet with a new therapist (Dr. Hager) who specializes in Somatic Experiencing and hopefully she will have ideas as to whether there is a medication that can help stabilize me through treatment or if it's just better to stay completely medication-free. I've learned from three new sources that given my reaction to the EMDR therapy (it induced seizures and got us nowhere), that that means I'm not yet ready for it and need further in-depth preparatory therapy....which is what the Somatic Experiencing is, along with NeuroFeedback (I'm waiting for callbacks from those guys).
So given my current instability, we've enrolled Evan and Olivia in preschool/K/daycare primarily for their safety, as I can't give them the care they need in this thrashing-seizure-escalation stage; nor can I with "just" the frozen versions anymore because they too have worsened—as in I often get NO heads up now. A year ago I would get 15-20 minutes 'heads up' before they started so I could go sit or lay down in time, but now that timeframe has shortened progressively to nothing. Squat. Sometimes not even a second. I newly find myself frozen in standing positions now, or gripping onto a door frame mentally begging to not fall plank downward and knock myself out. Or even essentially upside down, as in, I've gotten thrown forward at the waist while standing and can't get back up so am essentially frozen with my head hanging upside down. NONE of which do we want the kids to see or feel responsible for or even remember as part of their childhood. But we can only afford five more weeks of it (and by 'afford' I mean, go into unwanted debt on a credit card with a very small limit), unless we apply for more credit somewhere/how. This is additionally concerning.
I realize how shocking and horrible this all must sound to some of you, but if I don't include the actual reality-based details of it all, you may not understand why we're making some of the decisions we are having to make...and I know I would want to understand if it was you going through something like this...
I know I'm taking a relational risk by admitting all this publicly, and believe me, I would much rather keep it all to myself...but we are admittedly and deeply desperate for help. Any personal pride has long left the building and necessity/safety rules now. We still hope that God will use this crazy experience to help someone/let me relate to someone in the future, but for now, in our lives He is choosing not to heal it quickly...so it looks to be a longer process of healing. It's already been over two years we've been dealing with all of this (sidenote: digestive issues turn out to be part of PTSD symptoms too...hmmm), and now it basically boils down to, is the remaining process (as far as we're aware of) going to take several years or 45 days? I obviously would vote for the latter. I'm begging and desperate for the latter. Unless a medication can get me through any length of these therapies, I'm truthfully not sure how much more of this mental anguish I can handle. The limit of what I can handle is seriously being challenged right now. Please pray that if no medication can help get me through, that God will replace medication with grace and just allow me the ability to do the work that's required that will effectively let me be part of this life again with any degree of purpose. In all reality, if one of those doesn't happen so that I can participate in either of the lengths of treatment plans, I will end up having to be admitted to a general psych ward that has no healing therapies, just sedation and straps, which will be a huge waste of time, money and me. Or Matt will have to quit work to take care of the me and the kids. No bueno all around.
IF we are enabled to get one of these treatment plans started asap, we are indeed still planning/hoping to move to South Carolina sooner than later (and eventually transition fully into the missionary calling)—with the primary reason of moving still being to reduce the cost of living so there aren't so many continual things that we're never able to afford. Plus, we need to be able to rent an actual house with a yard since I can't drive nor even step foot outside our door without a protective chaperone guarding against stairs/concrete/etc in case I collapse. A yard would do me and the kids an enormous favor as far as mental and physical freedom, especially if we're stuck at home for a couple therapeutic years; a yard would help alleviate that stressor tremendously—and we just can't afford that or anything else out here. I realize that 'a yard' might sound kind of trivial to some, but for us, especially with our particularly-trapped circumstances, some sort of outdoor "safe space" is an absolute necessity. I need some sun and some fresh, quiet air, in a big bad way—without the 24-hr freeway noise and the "hey kiddos, don't ever do anything but tiptoe quietly" upstairs stressors we currently have in our condo. Ha.
So, though we are on the strictest of budgets and The Meadows' 45-day fee is actually more than our yearly salary, we're stepping out to ask if there's possibly a group of people who maybe aren't on as strict a budget who'd be gracious and willing to help us raise a large portion of the funds to either help toward the 45-day plan (400people@$100ea; 200people@$200ea; 20people@$2,000ea—I know it all just sounds like too much to ask), or alternatively, to help off-set costs of continuing daycare until I'm stable or the kids are in school if we go down the 'several years of therapy' road instead (some that are expensive and not covered by insurance). No matter what, there are HUGE monetary obstacles in our lives that we simply cannot hurdle on our own. We may qualify for the financing offered at The Meadows, but I can't even imagine what the monthly payment would be to pay off $44K. (another sidenote: at first I thought the $44K sounded so incredibly high, but then I remembered what my 3-day stay at UCSD cost with NO specialty therapies, just sitting in a bed, and 45 days there would have cost $130,000+...so I guess it's not as outrageous as it initially sounds?! And way more worth the money). We would be willing to take on the financing loan to begin with, just to get me in and started, but we would need help paying it off sooner than later, especially on a soon-to-be missionary budget. We could also wait until we get to SC to start in a different treatment center or long-term plan if that's a better plan—we're praying through all the options right now—but in the meantime I'm doing everything my body will allow me to do during the day to start heading toward healing, but it's seriously a second-by-second life I live and I can't be relied upon to responsibly commit to anything right now. We will let you know when the solid direction is revealed. God will be my ultimate healer, in His time and in His ways—I just don't know when or what those will be and in the meantime (especially as a mother) I want to prepare wisely and protectively for the unknown as best I can. My faith in His purposes is still strong (though admittedly challenged and not at all understood) but I do entirely still trust Him and His ultimate plan and look forward to seeing what it is. I don't know what the glory will look like that comes out of this, but it's His regardless. Love Him. Hate this. That's nothing new...He knows how I feel about it...I miss the life I love.
I love and appreciate all of you tremendously for your care and emotional investment into our lives. Please pray for Matt and the kids also, as this has obviously been quite an adjustment—they all are rockstars though and have thus far handled everything way better than I have. They're awesome. I am so in love with my family—I just really want to be a functional part of it again. I totally miss serving...and bible studies...and girl's nights out...and investing into other's lives like crazy too...but those most-cherished roles of wife and mommy are hard to top. I know you understand...
So, I thank you all,
Love you,
Tina
Organizer
Tina Brown
Organizer
San Diego, CA