People keep telling me that it takes time to get the medications right for someone diagnosed with bipolar disorder. That it takes time to get things stabilized. That it will get better, but we must be patient.
But this is time we don't get back. Ticking along, day in and day out, week by week, month by month. No one knows how long will be. And it strikes me that it's like being in labor. It can be so very painful, with moments of relief in the early stages. As you progress through transition, those breaks become fewer and farther between, until it feels like you're in one long never ending contraction. The outcome should be beautiful, but it's never a sure thing.
And frankly, when you're in transition, you want to kill the bas*ard who did this to you. Right? If women in labor had hand guns, there'd be a lot more single parent households. Some days, the psychiatrists and therapists seem like those fathers in the labor room. Why can't they just make it better? If I hear I don't know from one more doctor, I won't be responsible for my actions.
Where's my epidural? Or my child's? She's knee deep in paranoia, mania and hallucinations. She didn't choose that. She's on a host of psychotropic drugs. Drugs that seem to be increasing her symptoms instead of alleviating them.
I've heard of medical internships in which the students are placed in situations that simulate the experience of the patient. The idea is that the intern will gain compassion, develop empathy and be a better, more responsive doctor. I want to see this happen in the field of psychiatry. Give those interns the drugs they prescribe, let them experience the side effects at least, so that they have more information about what they're doing before they say, I don't know, try this drug.
Thursday, October 21, 2010
Wednesday, October 20, 2010
One More Thing At a Time
Lily was doing well during visitation last night. Being in an environment where she doesn't feel so out of control (very restrictive ward) helps her cope, and when she's agitated they medicate her pretty heavily. But, her eyes were clear and she was able to laugh about some things. We both needed that. I've been in contact with her case manager and new psychiatrist and am hopeful they'll help her return to a calmer state.
In the meanwhile, I'm making calls to her out-patient psychiatrist, her therapist, school, the Stanford program we're looking into, anyone I can think of who can help. I can do this. I have amazing support at work, I'm extremely grateful. So - counting my blessings.
On the homefront, I default to bunny manager. I'm not an animal person. At all. I think they're cute. But handling one makes me sort of squeamish. They wiggle when you try to pick them up. I can handle the cat, who requires very little handling thank you.
But, Lily has a bunny. The agreement when we acquired the bunny was that she would have complete and total responsibility for the bunny. Feeding, care, cage cleaning. And she's been very responsible. Lily loves this bunny. And I need to care for the cute little guy while Lily can't. So, I very carefully lift the guy out of his cage so he can get some daily exercise. I clean the smelly cage, fill it up with fluffy stuff so he's comfy when he goes back in, and I make sure his water, food and fresh veggie treats are administered. My twelve year old helps, he's a sweet peach. But the majority of the handling falls to me. **sigh**
Weirdly, I don't really resent this. The bunny doesn't yell or get distraught. He's calm. He may kick a little, but I've learned how to stay out of the way of his back paws. I get why Lily loves him. He's cute and soft and has big brown eyes. But the bunny and I will both be glad when Lily is home.
In the meanwhile, I'm making calls to her out-patient psychiatrist, her therapist, school, the Stanford program we're looking into, anyone I can think of who can help. I can do this. I have amazing support at work, I'm extremely grateful. So - counting my blessings.
On the homefront, I default to bunny manager. I'm not an animal person. At all. I think they're cute. But handling one makes me sort of squeamish. They wiggle when you try to pick them up. I can handle the cat, who requires very little handling thank you.
But, Lily has a bunny. The agreement when we acquired the bunny was that she would have complete and total responsibility for the bunny. Feeding, care, cage cleaning. And she's been very responsible. Lily loves this bunny. And I need to care for the cute little guy while Lily can't. So, I very carefully lift the guy out of his cage so he can get some daily exercise. I clean the smelly cage, fill it up with fluffy stuff so he's comfy when he goes back in, and I make sure his water, food and fresh veggie treats are administered. My twelve year old helps, he's a sweet peach. But the majority of the handling falls to me. **sigh**
Weirdly, I don't really resent this. The bunny doesn't yell or get distraught. He's calm. He may kick a little, but I've learned how to stay out of the way of his back paws. I get why Lily loves him. He's cute and soft and has big brown eyes. But the bunny and I will both be glad when Lily is home.
Tuesday, October 19, 2010
One Thing At a Time
My daughter is back in the hospital. I know all the platitudes, that which doen't kill us makes us stronger, God only gives us what we can handle, behind every cloud . . .
But I just feel like hell. Scared and sad for her, and yes, for me and her siblings. My mom, my only local family member, is not willing to help, and was bitter and unkind when I asked for support. This is not a new life lesson, but I always want it to be different, for her to be a different mom.
So, I need to put that away, it's not the most important thing right now. I want Lily to feel better, to see improvement so she can function like a normal 13 year old girl. I want her to roll her eyes at me over something inconsequential. I don't want her to be so manic and lost in hallucinations that she has to be locked up with 17 year old troubled young men and young women. The differences between 13 year olds who've been sheltered and 17 year olds who have not, is incredible.
The meds are wrong, they're not working, we've been talking to the professionals about it for weeks now. We don't have anything good to show for all this trial and error manner of handling her distress. I'll keep talking to the psychiatrists about it of course, and I clearly need to be more assertive about my concerns. I've been told I need to bring my "bit*h" out when speaking with the doctors. Maybe that's true, it's an approach I haven't tried yet, and I'm running out of tricks.
So I drove by the beach this morning on the way home from dropping my younger son off at school. I wanted to see the surf and feel that cool breeze. I love the blue water, the sparkle of the sun on the choppy tide. But it's a foggy morning. I parked anyway, high on the cliffs, and peered down at the surf. The only water I could see was straight ahead, about twenty or thirty yards out. Just a small section of crashing waves, foam and sand. To my left, right and rear, a soft wall of gray fog insulated my meditative state. Usual sounds were muffled, but I could hear the sea lions like they were in the next parking space over.
Why do certain sounds carry in the fog? I tuned in, to the sea lions, and then to the waves crashing on the sand. When I focused on the waves, the bark of the sea lions receded, and vice versa. I focused on the metal railing protecting the walkway from the drop of the cliffs. Slightly corroded, gaps at the joinings, marked by bird droppings. Just beyond the vertical supports, a dying stand of dandelions, fluff long since blown away, stems and withering leaves darkening before they crumble in the autumn wind. A bird flew past and drew my gaze to her fellow scavengers. They hopped about on the asphalt and picked at debris before scattering upward and onto the next likely picnic spot.
I have just about enough concentration for one thing at a time. When I stay focused on Lily's suffering, or my own pain, I have a physical sensation of drowning, stomach ache, shortness of breath. When I take a mini-vacation and retreat to the natural world, I breath better without thinking. It's not a place I can stay. I need to get back to my phone calls and war to help Lily heal. But the breather probably helps to keep me from cracking up. If I'm leaking all my insides out onto the ground, I'm no help to Lily, or anyone. But if I can stay focused on what's right in front of me, I can handle one task at a time. First, phone the hospital to see how Lily's night was. Second, well, I'll have to decide on that after I've completed task one.
But I just feel like hell. Scared and sad for her, and yes, for me and her siblings. My mom, my only local family member, is not willing to help, and was bitter and unkind when I asked for support. This is not a new life lesson, but I always want it to be different, for her to be a different mom.
So, I need to put that away, it's not the most important thing right now. I want Lily to feel better, to see improvement so she can function like a normal 13 year old girl. I want her to roll her eyes at me over something inconsequential. I don't want her to be so manic and lost in hallucinations that she has to be locked up with 17 year old troubled young men and young women. The differences between 13 year olds who've been sheltered and 17 year olds who have not, is incredible.
The meds are wrong, they're not working, we've been talking to the professionals about it for weeks now. We don't have anything good to show for all this trial and error manner of handling her distress. I'll keep talking to the psychiatrists about it of course, and I clearly need to be more assertive about my concerns. I've been told I need to bring my "bit*h" out when speaking with the doctors. Maybe that's true, it's an approach I haven't tried yet, and I'm running out of tricks.
So I drove by the beach this morning on the way home from dropping my younger son off at school. I wanted to see the surf and feel that cool breeze. I love the blue water, the sparkle of the sun on the choppy tide. But it's a foggy morning. I parked anyway, high on the cliffs, and peered down at the surf. The only water I could see was straight ahead, about twenty or thirty yards out. Just a small section of crashing waves, foam and sand. To my left, right and rear, a soft wall of gray fog insulated my meditative state. Usual sounds were muffled, but I could hear the sea lions like they were in the next parking space over.
Why do certain sounds carry in the fog? I tuned in, to the sea lions, and then to the waves crashing on the sand. When I focused on the waves, the bark of the sea lions receded, and vice versa. I focused on the metal railing protecting the walkway from the drop of the cliffs. Slightly corroded, gaps at the joinings, marked by bird droppings. Just beyond the vertical supports, a dying stand of dandelions, fluff long since blown away, stems and withering leaves darkening before they crumble in the autumn wind. A bird flew past and drew my gaze to her fellow scavengers. They hopped about on the asphalt and picked at debris before scattering upward and onto the next likely picnic spot.
I have just about enough concentration for one thing at a time. When I stay focused on Lily's suffering, or my own pain, I have a physical sensation of drowning, stomach ache, shortness of breath. When I take a mini-vacation and retreat to the natural world, I breath better without thinking. It's not a place I can stay. I need to get back to my phone calls and war to help Lily heal. But the breather probably helps to keep me from cracking up. If I'm leaking all my insides out onto the ground, I'm no help to Lily, or anyone. But if I can stay focused on what's right in front of me, I can handle one task at a time. First, phone the hospital to see how Lily's night was. Second, well, I'll have to decide on that after I've completed task one.
Saturday, October 16, 2010
Saturday Night Fever
The call comes down the stairs, as I'm getting ready to climb into bed.
"Mom - my akathisia, it's bothering me!"
I'm feeling so strung out. Getting a cold, aching back, so, so tired. And the need is so great. Her need, because she just genuinely needs so much, and my son's need because otherwise he gets lost in his sister's disorder. And they both deserve to have all the help and comfort they can get. I've said it before, I'm spread thin.
This afternoon my sister phoned from another time zone and filled me in on her diagnosis of my daughter. No, she's not a doctor, psychologist or even educated in the field. She just wants to help and always feels a need to have the answers for the rest of us, whether we want her brand of fix-it or not. And I know I'm not gracious, but I don't want her two cents worth on this one. She argues with me when I explain the current diagnosis and treatment plan, not that they're working, but she's just wrong. I know that. And I feel defensive and angry.
So, back to the evening's entertainment. I head back up the stairs to rub feet until Lily's close to falling asleep. Mid rub, I go tuck in brother again and try to reassure him that he's on my list, I'm aware of him, appreciate and love him. And I do. I go back in to finish the foot rub, trying not to rub my resentment into her skin, trying to keep thoughts of loving my children in my tired frustrated head.
But the train that's running through my mind tonight is about the creeping reality about my classes. I think I'm just going to have to drop my classes and delay graduation. This is hard for me. The individual thing that has kept me relatively sane through many years of single parenthood is my work towards an undergraduate college degree. I'm so close, just 15 units away. Old business, needing to finish college 30 plus years after high school. I feel like I need this degree. But the truth is that my daughter needs me more than I need the degree. That sounds altruistic. It's not. There is no contest. But I feel bad about it anyway.
"Mom - my akathisia, it's bothering me!"
I'm feeling so strung out. Getting a cold, aching back, so, so tired. And the need is so great. Her need, because she just genuinely needs so much, and my son's need because otherwise he gets lost in his sister's disorder. And they both deserve to have all the help and comfort they can get. I've said it before, I'm spread thin.
This afternoon my sister phoned from another time zone and filled me in on her diagnosis of my daughter. No, she's not a doctor, psychologist or even educated in the field. She just wants to help and always feels a need to have the answers for the rest of us, whether we want her brand of fix-it or not. And I know I'm not gracious, but I don't want her two cents worth on this one. She argues with me when I explain the current diagnosis and treatment plan, not that they're working, but she's just wrong. I know that. And I feel defensive and angry.
So, back to the evening's entertainment. I head back up the stairs to rub feet until Lily's close to falling asleep. Mid rub, I go tuck in brother again and try to reassure him that he's on my list, I'm aware of him, appreciate and love him. And I do. I go back in to finish the foot rub, trying not to rub my resentment into her skin, trying to keep thoughts of loving my children in my tired frustrated head.
But the train that's running through my mind tonight is about the creeping reality about my classes. I think I'm just going to have to drop my classes and delay graduation. This is hard for me. The individual thing that has kept me relatively sane through many years of single parenthood is my work towards an undergraduate college degree. I'm so close, just 15 units away. Old business, needing to finish college 30 plus years after high school. I feel like I need this degree. But the truth is that my daughter needs me more than I need the degree. That sounds altruistic. It's not. There is no contest. But I feel bad about it anyway.
Friday, October 15, 2010
Stanford Update
The people we met with at Stanford were amazing! I'm so hopeful that we'll make some progress there. The therapist we met with was wonderful - and seemed to understand so much of what we've been through. She explained things about Lily's behavior that I didn't understand. How the amygdala is busy firing and gets in the way of prefrontal cortex processing, resulting in some of the impulsive and risky behavior I've been seeing.
It's been like watching Lily regress. Since she was a little kid she's known it's not safe to run into the street, but that's just the kind of behavior that's been cropping up and puzzling me. Escalating fears, inability to reason during an argument with her brother, understanding boundaries. She's been losing rational bits of herself, and I'm sure she doesn't even understand what's happening.
So, fingers crossed, we're hoping for that miracle that will return my daughter to us. Different meds, better therapy, family support so I know what the hell to do at any given moment, instead of feeling helpless and ineffective as a parent. If I understood it better, I might be able to more effectively deal with teachers and other adults who judge without knowing the facts.
One thing is for sure. As tired and scared as I get, I'll keep chipping away until we get some more useful answers. I will not abandon my daughter in her time of need.
It's been like watching Lily regress. Since she was a little kid she's known it's not safe to run into the street, but that's just the kind of behavior that's been cropping up and puzzling me. Escalating fears, inability to reason during an argument with her brother, understanding boundaries. She's been losing rational bits of herself, and I'm sure she doesn't even understand what's happening.
So, fingers crossed, we're hoping for that miracle that will return my daughter to us. Different meds, better therapy, family support so I know what the hell to do at any given moment, instead of feeling helpless and ineffective as a parent. If I understood it better, I might be able to more effectively deal with teachers and other adults who judge without knowing the facts.
One thing is for sure. As tired and scared as I get, I'll keep chipping away until we get some more useful answers. I will not abandon my daughter in her time of need.
Tuesday, October 12, 2010
When Things Became Even Worse
After Lily's psychotic episode, I thought we'd been through the worst, and that with treatment things would just improve. I was wrong. Each day was just as scarey as the one before, and anxiety levels for all of us were sky high. Lily's hallucinations were increasing.
I tried to keep Lily and her brother busy with fun activities. Sleepovers, visits to the Boardwalk, going to the park with friends. I tried to keep a close eye on Lily and minimize her distress, but that didn't always work. We spent an evening at the Boardwalk which ended badly. The sound levels bothered Lily, but she didn't want to leave. She rode one particular ride on which the ride operator encouraged the riders to yell as loudly as they could. Lily was in tears when the ride stopped, and furious at the ride operator. I knew we needed to leave, and we headed for the car. By the time we got to the car, Lily was yelling at her brother, unhappy about sounds he was making. She was out of control and it was a hard short ride home.
Within a week, things deteriorated even more. We had a double sleepover on a Friday night, with a friend each for Lily and her brother. No one got much sleep, and we tried to keep things calmer the next day. By that evening however, Lily was higly agitated. She spent a fair amount of time yelling, mostly that she didn't feel safe. I repeated that I would keep her safe and tried to hold her close to calm her down. It didn't help, and she was clearly afraid of me. I agreed to step out of her room to try to make her feel more comfortable. Lily picked up the phone and called her friend's mother, asking to be taken to the doctor. I was unaware of the call, and the mother called my cell phone. I gave her a brief explanation, and rushed back up the stairs to try to calm Lily down again.
By then, Lily had locked her door and phoned 911. I got the extension and explained to the operator that Lily was having hallucinations and was under the care of a psychiatrist. The operator explained that she had to send deputies out to check on Lily, and we stayed on the phone until the deputies arrived. The operator explained to Lily who was coming and that they'd need to go into her room to speak with her. Lily was completely compliant.
When the deputies arrived, I fell apart trying to explain what was happening. The trio of deputies were compassionate and amazingly good with Lily. She wanted to see a doctor, and the deputies made the decision to take her to emergency. They explained everything to me, and I followed them to ER. Lily was admitted on a 5150, code for a danger to herself. We spent a long night in ER. There is no local adolescent psych ward, so Lily would be transferred to the nearest one, about an hour away. When the ambulance came to transfer Lily, she asked me to ride with her. Of course I went. By then her hallucinations had stopped and she wanted me with her.
We rode to Fremont and I followed Lily into the facility, thinking I'd go to the cafeteria and get coffee after I got Lily settled. I thought I'd sit and wait for a reasonable hour to call for a ride home. Wrong again. We had entered a locked facility. I was stopped at the door to the adolescent ward. It was explained to me that I couldn't go in, and there was no public cafeteria. I was let out the locked exterior door, purse and cell phone in hand, in a city I wasn't familiar with. It was not quite six in the morning. No car, no knowledge of a nearby coffee shop, no place to wait besides a bench in front of a closed Quiznos sandwich shop. I'd left my precious daughter in the care of strangers and would be allowed to see her that evening, for not more than one hour. Her admittance to this facility was involuntary. Neither she nor I had any control over her admittance for the next 72 hours.
In tears, exhausted, feeling destitute, I wandered up and down the nearby streets hoping to find a Starbucks. I finally sat on a bench and called my mom who'd been blissfully unaware of the events of the previous evening. I'm sure I frightened more than one person on their way for an early shift somewhere. This was as low as I'd ever been.
I tried to keep Lily and her brother busy with fun activities. Sleepovers, visits to the Boardwalk, going to the park with friends. I tried to keep a close eye on Lily and minimize her distress, but that didn't always work. We spent an evening at the Boardwalk which ended badly. The sound levels bothered Lily, but she didn't want to leave. She rode one particular ride on which the ride operator encouraged the riders to yell as loudly as they could. Lily was in tears when the ride stopped, and furious at the ride operator. I knew we needed to leave, and we headed for the car. By the time we got to the car, Lily was yelling at her brother, unhappy about sounds he was making. She was out of control and it was a hard short ride home.
Within a week, things deteriorated even more. We had a double sleepover on a Friday night, with a friend each for Lily and her brother. No one got much sleep, and we tried to keep things calmer the next day. By that evening however, Lily was higly agitated. She spent a fair amount of time yelling, mostly that she didn't feel safe. I repeated that I would keep her safe and tried to hold her close to calm her down. It didn't help, and she was clearly afraid of me. I agreed to step out of her room to try to make her feel more comfortable. Lily picked up the phone and called her friend's mother, asking to be taken to the doctor. I was unaware of the call, and the mother called my cell phone. I gave her a brief explanation, and rushed back up the stairs to try to calm Lily down again.
By then, Lily had locked her door and phoned 911. I got the extension and explained to the operator that Lily was having hallucinations and was under the care of a psychiatrist. The operator explained that she had to send deputies out to check on Lily, and we stayed on the phone until the deputies arrived. The operator explained to Lily who was coming and that they'd need to go into her room to speak with her. Lily was completely compliant.
When the deputies arrived, I fell apart trying to explain what was happening. The trio of deputies were compassionate and amazingly good with Lily. She wanted to see a doctor, and the deputies made the decision to take her to emergency. They explained everything to me, and I followed them to ER. Lily was admitted on a 5150, code for a danger to herself. We spent a long night in ER. There is no local adolescent psych ward, so Lily would be transferred to the nearest one, about an hour away. When the ambulance came to transfer Lily, she asked me to ride with her. Of course I went. By then her hallucinations had stopped and she wanted me with her.
We rode to Fremont and I followed Lily into the facility, thinking I'd go to the cafeteria and get coffee after I got Lily settled. I thought I'd sit and wait for a reasonable hour to call for a ride home. Wrong again. We had entered a locked facility. I was stopped at the door to the adolescent ward. It was explained to me that I couldn't go in, and there was no public cafeteria. I was let out the locked exterior door, purse and cell phone in hand, in a city I wasn't familiar with. It was not quite six in the morning. No car, no knowledge of a nearby coffee shop, no place to wait besides a bench in front of a closed Quiznos sandwich shop. I'd left my precious daughter in the care of strangers and would be allowed to see her that evening, for not more than one hour. Her admittance to this facility was involuntary. Neither she nor I had any control over her admittance for the next 72 hours.
In tears, exhausted, feeling destitute, I wandered up and down the nearby streets hoping to find a Starbucks. I finally sat on a bench and called my mom who'd been blissfully unaware of the events of the previous evening. I'm sure I frightened more than one person on their way for an early shift somewhere. This was as low as I'd ever been.
The Big Scare
I'm having a harder time staying up today. I'm missing school, and am getting further behind in my studies. I have such a strong need to accomplish something, to move forward, but don't feel very motivated.
We're home again/still. Lily has been sleeping all morning because of her meds. We'll be at Stanford in less than 48 hours for our interview with the pediatrc bipolar group, and I feel like I'm pinning all my hopes for a brighter future on this trip. Not that all will be fixed/cured by one visit, but I so very, very much want to see some kind of change. Progress.
Lily did go to school for a couple of hours yesterday, which was progress, but I'd love to see more. I'm greedy for success. Wanting to see it in leaps and bounds. We have days where each second ticks by in what feels like slow motion. It's how someone feels when they're trapped by circumstances outside of their control. Tick, tick, tick . . .
But perspective is my old friend. We're not where we were during the summer. That was a surreal series of events.
Lily's anxiety levels had escalated through the spring. By the time we finished school in June, I knew we needed help, we weren't handling things well. We returned to Lily's therapist after a break of more than a year. One of the biggest issues was that Lily couldn't tolerate certain songs or sounds. She'd either curl up in a little ball trying to shrink away from the sound, or she'd yell and kick until the offending song/sound was discontinued. In addition, she was afraid of everything. Being alone in a room, a stranger walking past. I was getting pretty twitchy myself.
Leading up to this, Lily had been complaining about hearing things. I downplayed her complaints, with comments about how we could all hear our neighbors (we live in a townhome) and that everyone heard things, including our own thoughts. Lily also began tapping her head nine times whenever she heard a word containing the letters "ck". This seemed like such a strange compulsion. The behavior wasn't triggered just by sound, or she'd need to tap her head whenever she heard a "k" sound. She didn't. She only tapped when she heard words with "ck". I honestly didn't know what to make of it.
Lily's therapist suggested that we see a psychiatrist. I got a recommendation and was able to get Lily in within a week. Once in the psychiatrist's ofifce, Lily's behavior became more acute. She looked around the room wide eyed, clearly fearful, and was upset by holes. Drawer openings, small holes in walls, spaces under sofas. I voiced my concerns. She didn't behave that way anywhere else. I openly wondered if she was putting us on. She became very upset, I clearly wasn't helping the situation. We opted to begin treatment with a medication for her anxiety. Lily objected to the first drug after a week, saying the drug was "evil". That threw me. I didn't want the med changed, but the psychiatrist felt like the therapeutic value would be lost if Lily was opposed to taking the med. So we switched to a different SSRI.
We continued with weekly visits, and Lily's behavior continued to deteriorate. In mid July, Lily had what I term a psychotic episode. One evening she became agitated and wild eyed. She told me she didn't feel safe, and was afraid even when she looked at me. I told her I'd keep her safe, and went to get a benadryl for her to use as a sedative. When I returned to the room, Lily had picked up a cat scratching post and began beating a book with a cover she disliked. I took the post out of her hands and pulled her onto the bed in my arms. She struggled, but I spoke calmly about how we don't do that, we don't bang on things. I offered her the benadryl, which she didn't want to take. She asked me if it was poison. I was alarmed, told her it was the same medicine she'd taken often before, and told her she had to take it. She was angry, but complied.
Lily still couldn't settle, and was yelling and kicking. I took her into our living room to try to distract her with a movie. We sat together on the couch. Lily said she felt like she needed to go outside and run around. It was nearing eleven o'clock, so I told her she couldn't. She jumped up off the couch and ran out the front door into our dark parking lot. I followed. Lily was running and throwing rocks at a fence. I told her she had to come in, and after a minute or two, she did. We sat back down on the couch, and Lily told me she was afraid she'd run outside again, and run into the street. I told her I'd keep her safe, and put my arms around her. At that point, she fought me and struggled to get away from me. I held on, promising I'd keep her safe. She tried to bite me, but I held on untl she got tired. When the benadryl finally started to make her sleepy, she wanted to lay down on the couch. We laid down on opposite ends. I wanted to stay close in case she tried to get out again. Lily finally became tired enough that she wanted to go up and sleep in her own bed.
What Lily explained the next day, was that she was having visual hallucinations that night. When she looked at me, I looked different, like an alien. The morning after this episode, I phoned Lily's psychiatrist. An antipsychiotic was prescribed, and Lily began taking it that evening.
I was shaken and scared. I began researching schizophrenia and bipolar disorder in earnest, trying to build on my minimal understanding of these disorders with the latest research available on the internet. We didn't have a diagnosis yet, but Lily's symptoms had to be treated. This was the first truly irrevocable change for us. I knew I couldn't leave Lily and her brother home alone for even a few minutes. My mom agreed to come and stay with the kids while I worked at my part time job. The situation was stressful and frightening for everyone. Each night I would lie awake and wonder if Lily would get through the night without another episode. Each morning I would wake and rush up to check on her. I stayed calm at home, but cried at work. This was a new reality.
We're home again/still. Lily has been sleeping all morning because of her meds. We'll be at Stanford in less than 48 hours for our interview with the pediatrc bipolar group, and I feel like I'm pinning all my hopes for a brighter future on this trip. Not that all will be fixed/cured by one visit, but I so very, very much want to see some kind of change. Progress.
Lily did go to school for a couple of hours yesterday, which was progress, but I'd love to see more. I'm greedy for success. Wanting to see it in leaps and bounds. We have days where each second ticks by in what feels like slow motion. It's how someone feels when they're trapped by circumstances outside of their control. Tick, tick, tick . . .
But perspective is my old friend. We're not where we were during the summer. That was a surreal series of events.
Lily's anxiety levels had escalated through the spring. By the time we finished school in June, I knew we needed help, we weren't handling things well. We returned to Lily's therapist after a break of more than a year. One of the biggest issues was that Lily couldn't tolerate certain songs or sounds. She'd either curl up in a little ball trying to shrink away from the sound, or she'd yell and kick until the offending song/sound was discontinued. In addition, she was afraid of everything. Being alone in a room, a stranger walking past. I was getting pretty twitchy myself.
Leading up to this, Lily had been complaining about hearing things. I downplayed her complaints, with comments about how we could all hear our neighbors (we live in a townhome) and that everyone heard things, including our own thoughts. Lily also began tapping her head nine times whenever she heard a word containing the letters "ck". This seemed like such a strange compulsion. The behavior wasn't triggered just by sound, or she'd need to tap her head whenever she heard a "k" sound. She didn't. She only tapped when she heard words with "ck". I honestly didn't know what to make of it.
Lily's therapist suggested that we see a psychiatrist. I got a recommendation and was able to get Lily in within a week. Once in the psychiatrist's ofifce, Lily's behavior became more acute. She looked around the room wide eyed, clearly fearful, and was upset by holes. Drawer openings, small holes in walls, spaces under sofas. I voiced my concerns. She didn't behave that way anywhere else. I openly wondered if she was putting us on. She became very upset, I clearly wasn't helping the situation. We opted to begin treatment with a medication for her anxiety. Lily objected to the first drug after a week, saying the drug was "evil". That threw me. I didn't want the med changed, but the psychiatrist felt like the therapeutic value would be lost if Lily was opposed to taking the med. So we switched to a different SSRI.
We continued with weekly visits, and Lily's behavior continued to deteriorate. In mid July, Lily had what I term a psychotic episode. One evening she became agitated and wild eyed. She told me she didn't feel safe, and was afraid even when she looked at me. I told her I'd keep her safe, and went to get a benadryl for her to use as a sedative. When I returned to the room, Lily had picked up a cat scratching post and began beating a book with a cover she disliked. I took the post out of her hands and pulled her onto the bed in my arms. She struggled, but I spoke calmly about how we don't do that, we don't bang on things. I offered her the benadryl, which she didn't want to take. She asked me if it was poison. I was alarmed, told her it was the same medicine she'd taken often before, and told her she had to take it. She was angry, but complied.
Lily still couldn't settle, and was yelling and kicking. I took her into our living room to try to distract her with a movie. We sat together on the couch. Lily said she felt like she needed to go outside and run around. It was nearing eleven o'clock, so I told her she couldn't. She jumped up off the couch and ran out the front door into our dark parking lot. I followed. Lily was running and throwing rocks at a fence. I told her she had to come in, and after a minute or two, she did. We sat back down on the couch, and Lily told me she was afraid she'd run outside again, and run into the street. I told her I'd keep her safe, and put my arms around her. At that point, she fought me and struggled to get away from me. I held on, promising I'd keep her safe. She tried to bite me, but I held on untl she got tired. When the benadryl finally started to make her sleepy, she wanted to lay down on the couch. We laid down on opposite ends. I wanted to stay close in case she tried to get out again. Lily finally became tired enough that she wanted to go up and sleep in her own bed.
What Lily explained the next day, was that she was having visual hallucinations that night. When she looked at me, I looked different, like an alien. The morning after this episode, I phoned Lily's psychiatrist. An antipsychiotic was prescribed, and Lily began taking it that evening.
I was shaken and scared. I began researching schizophrenia and bipolar disorder in earnest, trying to build on my minimal understanding of these disorders with the latest research available on the internet. We didn't have a diagnosis yet, but Lily's symptoms had to be treated. This was the first truly irrevocable change for us. I knew I couldn't leave Lily and her brother home alone for even a few minutes. My mom agreed to come and stay with the kids while I worked at my part time job. The situation was stressful and frightening for everyone. Each night I would lie awake and wonder if Lily would get through the night without another episode. Each morning I would wake and rush up to check on her. I stayed calm at home, but cried at work. This was a new reality.
Sunday, October 10, 2010
Understanding
I had an amazing talk with a Stanford researcher the other day. I'm looking into getting Lily involved in a study with a pediatric bipolar group. All during our phone interview, the researcher would ask a question that made it seem like she was a fly on the wall during our last few months.
"Does your daughter want things when you're out shopping and have a hard time taking 'no' for an answer?"
"All the time!"
Keep in mind, we're not talking about a 3 year old, or a spoiled little kid. This is an adolescent who's heard the word 'no' plenty. We're a single parent household with limited resources.
"Does your child make things a lot?"
"Oh yeah. Just before she was hospitalized the first time, she'd been making hand formed soaps day and night. The mess was tremendous, and she couldn't seem to stop."
I just wanted to cry. Here was a person asking questions that confirmed our experience as abnormal. I was so grateful! When you feel crazy, and I do, and I don't have bipolar, you are incredibly grateful for the affirmation of a knowledgeable professional in regard to the little things that make a whole of the puzzle in your world.
This affirmation is something I'd been missing. Nearly four months into a frightening, heartbreaking experience, and someone finally knew what the hell I felt but couldn't articulate. Yes, yes, yes! No one else had thus far fit the key into the lock. We have a diagnosis, but the meds aren't working. Someone help us please!
Help my daughter who suffers daily. Her mania is predictably unpredictable. And miserable for her. Not euphoric, not joyful. An awful surge of energy, adrenaline pushing through her lithe body, causing anger, frustration, akathisia (uncontrollable foot movements, like a constant twitch). Her fear is a constant.
Help for her brother who weathers the sea changes in his sister, his closest sibling, and has, for much of the time, lost his partner in silly childhood antics. Has lost the companion who wants to hang out and do nutty stuff together. Has lost so much of his mother who is strung out trying to treat the symptoms of an everchanging dynamic in a fog of fear and anger.
Help for me, to deal with the loss of my dreams for my beautiful daughter. Yes, we can have different dreams, and it WILL BE OK, but they are different dreams. Help for me to deal with the loss of dreams for myself. My life has irrevocably changed too. Work, college degree, even an occasional quiet evening. Gone for now. I go to sleep worrying about the fact that I really need to get a safe for the arsenal of meds in my kitchen, so that I don't have to worry about the unthinkable, a suicide attempt, an overdose, by my dear child.
"Does your daughter want things when you're out shopping and have a hard time taking 'no' for an answer?"
"All the time!"
Keep in mind, we're not talking about a 3 year old, or a spoiled little kid. This is an adolescent who's heard the word 'no' plenty. We're a single parent household with limited resources.
"Does your child make things a lot?"
"Oh yeah. Just before she was hospitalized the first time, she'd been making hand formed soaps day and night. The mess was tremendous, and she couldn't seem to stop."
I just wanted to cry. Here was a person asking questions that confirmed our experience as abnormal. I was so grateful! When you feel crazy, and I do, and I don't have bipolar, you are incredibly grateful for the affirmation of a knowledgeable professional in regard to the little things that make a whole of the puzzle in your world.
This affirmation is something I'd been missing. Nearly four months into a frightening, heartbreaking experience, and someone finally knew what the hell I felt but couldn't articulate. Yes, yes, yes! No one else had thus far fit the key into the lock. We have a diagnosis, but the meds aren't working. Someone help us please!
Help my daughter who suffers daily. Her mania is predictably unpredictable. And miserable for her. Not euphoric, not joyful. An awful surge of energy, adrenaline pushing through her lithe body, causing anger, frustration, akathisia (uncontrollable foot movements, like a constant twitch). Her fear is a constant.
Help for her brother who weathers the sea changes in his sister, his closest sibling, and has, for much of the time, lost his partner in silly childhood antics. Has lost the companion who wants to hang out and do nutty stuff together. Has lost so much of his mother who is strung out trying to treat the symptoms of an everchanging dynamic in a fog of fear and anger.
Help for me, to deal with the loss of my dreams for my beautiful daughter. Yes, we can have different dreams, and it WILL BE OK, but they are different dreams. Help for me to deal with the loss of dreams for myself. My life has irrevocably changed too. Work, college degree, even an occasional quiet evening. Gone for now. I go to sleep worrying about the fact that I really need to get a safe for the arsenal of meds in my kitchen, so that I don't have to worry about the unthinkable, a suicide attempt, an overdose, by my dear child.
Thursday, October 7, 2010
Memories
Lily was a fussy newborn, but once she was well established, she was a funny delight. She loved music, waving her hands back and forth in time with guitar music and dancing that cute little toddler bounce when a great disc was playing.
We attended a lovely laidback Episcopal church when she was little. The services were pretty informal, thank goodness, because it allowed us to attend and be embraced by a genuine fellowship. Lily was truly well loved, even though she was prone to loudly make herself known during the services.
In this congregation, children were permitted to receive communion at the parents' discretion. As a toddler, Lily loved the fresh baked bits of bread that served as the host. When the wine was passed, I took my sip and waved the celebrant on, indicating that Lily didn't need any. Finally, she caught on and had enough. She didn't want to miss out any longer. One fateful day, as I waved on the wine, Lily loudly proclaimed, "body and blood of Christ, I want a drink!" After a brief shocked silence, this lovely congregation shook the rafters with their laughter. Clearly Lily was able to articulate her needs and wants.
Lily continued to show a strong tendency to be open and honest about her feelings. I'd been a quiet and compliant child, and suffered for it, so I was happy to have a child who seemed strong and assertive. Especially a girl. When the dance teacher in her 3 year old dance group played music Lily didn't like, she said so. The teacher was incensed. I was amused. When the teacher threw a tantrum, I pulled my daughter out of the class. How can a preschool dance instructor have no sense of the absurd? No sense of appropriate humor for the 3 year old set? We're not talking Julliard.
When Lily started kindergarten, things became a bit more interesting. Lily was sent to the principal's office when she had a hard time calming down in class. The phone conversation I received at work went something like this:
"Ms. Smith, your daughter is in my office and she called me a name," said the middle aged principal.
"What name did she call you?" I asked after a short stunned silence.
"She called me a bug eyed creep."
I couldn't speak at first, struggled to keep from laughing out loud. The principal was tattling. I asked her, "What do you usually do when a student calls you a name?"
She replied that she'd never been called names by a student before. Well, I thought, not that you knew about anyway.
Lily and I were close. She always wanted to snuggle up with me, especially at bedtime when we read stories together. When she and her little brother were both small, we three would climb into my bed and read our favorite storybooks. Miss Spider and Duck Soup brought on fits of giggles every time.
Her creativity knew no bounds. One day she pulled out the black and orange markers and colored tiger stripes all over her brother and herself. Halloween costumes were easy around our house!
Lily's behavior as she progressed through elementary school should have been a clue about her impending mental health struggles. But I thought she was just sensitive and creative. We had some difficult family struggles. It became hard to know when Lily was being truthful or imaginative. I'm not entirely sure Lily always knew the difference between truth and lies.
But the reality we now face doesn't change the facts in our past. Lily was fun, funny and sweet. Her outrageous behavior as a small child seemed refreshing in a world where children aren't always respected as whole individuals. I can't see that as a mistake. She was, and is, entitled to be herself, to make her feelings known and to share the best parts of her artistry and imagination with the world. Even if I am her audience of one.
We attended a lovely laidback Episcopal church when she was little. The services were pretty informal, thank goodness, because it allowed us to attend and be embraced by a genuine fellowship. Lily was truly well loved, even though she was prone to loudly make herself known during the services.
In this congregation, children were permitted to receive communion at the parents' discretion. As a toddler, Lily loved the fresh baked bits of bread that served as the host. When the wine was passed, I took my sip and waved the celebrant on, indicating that Lily didn't need any. Finally, she caught on and had enough. She didn't want to miss out any longer. One fateful day, as I waved on the wine, Lily loudly proclaimed, "body and blood of Christ, I want a drink!" After a brief shocked silence, this lovely congregation shook the rafters with their laughter. Clearly Lily was able to articulate her needs and wants.
Lily continued to show a strong tendency to be open and honest about her feelings. I'd been a quiet and compliant child, and suffered for it, so I was happy to have a child who seemed strong and assertive. Especially a girl. When the dance teacher in her 3 year old dance group played music Lily didn't like, she said so. The teacher was incensed. I was amused. When the teacher threw a tantrum, I pulled my daughter out of the class. How can a preschool dance instructor have no sense of the absurd? No sense of appropriate humor for the 3 year old set? We're not talking Julliard.
When Lily started kindergarten, things became a bit more interesting. Lily was sent to the principal's office when she had a hard time calming down in class. The phone conversation I received at work went something like this:
"Ms. Smith, your daughter is in my office and she called me a name," said the middle aged principal.
"What name did she call you?" I asked after a short stunned silence.
"She called me a bug eyed creep."
I couldn't speak at first, struggled to keep from laughing out loud. The principal was tattling. I asked her, "What do you usually do when a student calls you a name?"
She replied that she'd never been called names by a student before. Well, I thought, not that you knew about anyway.
Lily and I were close. She always wanted to snuggle up with me, especially at bedtime when we read stories together. When she and her little brother were both small, we three would climb into my bed and read our favorite storybooks. Miss Spider and Duck Soup brought on fits of giggles every time.
Her creativity knew no bounds. One day she pulled out the black and orange markers and colored tiger stripes all over her brother and herself. Halloween costumes were easy around our house!
Lily's behavior as she progressed through elementary school should have been a clue about her impending mental health struggles. But I thought she was just sensitive and creative. We had some difficult family struggles. It became hard to know when Lily was being truthful or imaginative. I'm not entirely sure Lily always knew the difference between truth and lies.
But the reality we now face doesn't change the facts in our past. Lily was fun, funny and sweet. Her outrageous behavior as a small child seemed refreshing in a world where children aren't always respected as whole individuals. I can't see that as a mistake. She was, and is, entitled to be herself, to make her feelings known and to share the best parts of her artistry and imagination with the world. Even if I am her audience of one.
Saturday, October 2, 2010
Love, not Crackers
No hallucinations for the last 3 days - am holding my breath. If we could just have things stay steady for a while, just a while. My nerves could sure use a break. And the kids could stand to have a reasonably minded mom around again. I'm so tense, so fried - I can hardly stand to be around me.
Got to rub feet and backs tonight for a little while, and was able to be tender and remember my babies are the loves of my life. For real. No one else, no friend, no man, no other family, can hold a candle to my children, each and every one.
It's weird though, that my feelings towards my kids, loyalty, steadfastness, deep love, contrast so sharply with how I was raised. It brings my abandonment issues up right now, because my mom isn't able to help me. She's not capable of being patient or loving towards my daughter. She's unkind, makes things worse. I feel so angry about that, that she'd be cruel to my Lily, who needs so much love right now.
And she keeps coming around, telling me she's here for me, that she'd like to help. I don't want the little things she's compelled to bring over. Crackers, magazines, articles, vitamins. I know she means well, as well as she can. But those things don't mean anything right now. Not a damn thing. I need love and patience. Lily needs love and patience. We need peace, and sleep, and kindness that can't be bottled. And she doesn't have it.
Got to rub feet and backs tonight for a little while, and was able to be tender and remember my babies are the loves of my life. For real. No one else, no friend, no man, no other family, can hold a candle to my children, each and every one.
It's weird though, that my feelings towards my kids, loyalty, steadfastness, deep love, contrast so sharply with how I was raised. It brings my abandonment issues up right now, because my mom isn't able to help me. She's not capable of being patient or loving towards my daughter. She's unkind, makes things worse. I feel so angry about that, that she'd be cruel to my Lily, who needs so much love right now.
And she keeps coming around, telling me she's here for me, that she'd like to help. I don't want the little things she's compelled to bring over. Crackers, magazines, articles, vitamins. I know she means well, as well as she can. But those things don't mean anything right now. Not a damn thing. I need love and patience. Lily needs love and patience. We need peace, and sleep, and kindness that can't be bottled. And she doesn't have it.
Friday, October 1, 2010
In the Dark
We are in the midst of some dark days. Thinking we had the meds pretty much dialed in, ready to start a modified school schedule, resumption of some normalcy. Hah. The mania returned, including an increase in hallucinations. My Lily has bipolar disorder. With many a psychology class under my belt, I thought I understood bipolar disorder. I had no idea.
No idea what it's like on a daily basis. No idea that a person with bipolar disorder could hallucinate. No idea how hard it is to differentiate between what I'm supposed to hold firm on for behavior, and what I need to let go so she doesn't get over stressed and go into a bad cycle. Parenting doesn't cause bipolar disorder, it's brain chemistry. But parenting can influence mental health, both negatively and positively. Just as a too permissive parent fails to teach a child responsiility and doesn't give a child a chance to learn independence, a too strict parent can stress a kid completely out. See? I'm even writing in circles. Round and round we go, where we stop, nobody knows.
So, while I try to take each moment as it comes, I'm feeling really uncomfortable and unsure. I want to help my daughter. I want to see her succeed and I want to see her smile. She has so many strengths. Off the charts creativity. She's always been a mad/busy/productive artist. Projects have always been something she gets into with gusto. Done her way, though, no step by step instructions for this one. Color by number? Nope. Always coloring outside the lines. And she is a gifted writer. Wild, funny tall tales.
So if I could just go with her strengths, just go with the flow, she'd be pretty comfortable. But we have other parts of our lives that need to be attended to. I don't know yet how we can make it if I'm not working at my outside job. Medical benefits and wages make our life possible. We have safe, secure housing. We're OK. How are we going to pay rent and go to the doctor if that is lost? And if I can't be at work, that will be lost. It scares me. I'm not a person who depends on others for help. I handle my stuff. But I had a plan that isn't looking so manageable now. I feel kind of sick when I really think about it.
And I have to figure it out now, while I still have some money in the bank and the bills are paid. I have to be proactive, because if I don't get on it, the wolf will come knocking. And it feels like my house is made of straw. Forgive me for mixing metaphors, but my superwoman cape is looking a bit thin. I'm not giving up. But I am flyng lower to the ground.
No idea what it's like on a daily basis. No idea that a person with bipolar disorder could hallucinate. No idea how hard it is to differentiate between what I'm supposed to hold firm on for behavior, and what I need to let go so she doesn't get over stressed and go into a bad cycle. Parenting doesn't cause bipolar disorder, it's brain chemistry. But parenting can influence mental health, both negatively and positively. Just as a too permissive parent fails to teach a child responsiility and doesn't give a child a chance to learn independence, a too strict parent can stress a kid completely out. See? I'm even writing in circles. Round and round we go, where we stop, nobody knows.
So, while I try to take each moment as it comes, I'm feeling really uncomfortable and unsure. I want to help my daughter. I want to see her succeed and I want to see her smile. She has so many strengths. Off the charts creativity. She's always been a mad/busy/productive artist. Projects have always been something she gets into with gusto. Done her way, though, no step by step instructions for this one. Color by number? Nope. Always coloring outside the lines. And she is a gifted writer. Wild, funny tall tales.
So if I could just go with her strengths, just go with the flow, she'd be pretty comfortable. But we have other parts of our lives that need to be attended to. I don't know yet how we can make it if I'm not working at my outside job. Medical benefits and wages make our life possible. We have safe, secure housing. We're OK. How are we going to pay rent and go to the doctor if that is lost? And if I can't be at work, that will be lost. It scares me. I'm not a person who depends on others for help. I handle my stuff. But I had a plan that isn't looking so manageable now. I feel kind of sick when I really think about it.
And I have to figure it out now, while I still have some money in the bank and the bills are paid. I have to be proactive, because if I don't get on it, the wolf will come knocking. And it feels like my house is made of straw. Forgive me for mixing metaphors, but my superwoman cape is looking a bit thin. I'm not giving up. But I am flyng lower to the ground.
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