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The more things change, the more they stay the same

November 11th, 2010

We left home for the ER around 7:45 Tuesday evening. I packed a bag for Princess- a few changes of clothes (no drawstrings, hoods, scarves, belts or jewelry), a few books, some toiletries (not her hair pick, no bar soap). I brought my knitting and a magazine to read.

By now I know the answers the nurses and doctors need to hear. I rattled off the history of the previous visits and hospitalizations. I identified her current and previous medications, by name and dosage and treatment schedule. The terminology is almost second nature now- she is not in active crisis, but is unable to ensure that she is fully capable of maintaining her own safety at home. The bipolar tendencies were first diagnosed in September, and her brother’s mood disorder (the ever popular “NOS,” which in layman’s terms means “your kid’s brand of crazy doesn’t fit the current DSM definition”) was diagnosed about 20 months ago. There is no diagnosed history from parents or previous generations. Note that I don’t say there is no mental illness in the parents or previous generations; I firmly believe that there has to be something on both sides that we just don’t have on paper. I can’t accept that I ended up with two children with such significant mood disorders just by the luck of the draw.

The transport to the psychiatric hospital came at 7:30 on Wednesday. We were ready to leave. 24 hours of hospital food and sleeping on a the chair that pulls out to a cot took its toll. I survived the the 35 minute drive, as I followed the ambulance, without significant incident. The blowout I got during that same drive in September remained in the back of my mind.

We got her checked in without a snag. A couple of the nurses recognized her name when the paperwork was handed to them. They checked her bag, noting that everything was acceptable (I learn from experience). She hugged me goodbye and asked if I was coming to visit every day. I promised that we would try to visit, and would call if we could not be there in person. No one cried.

I feel numb and empty. The experts tell me what to do, I do those things, and yet we are not being able to help her. I have come to believe that she needs a specialized school situation, one which provided the cognitive behavioral therapy that she needs to combat the irrational thoughts before they become emotional actions. The medication is not enough. But the specialized school will require many, many hoops to be jumped through. I am in the process of the educational evaluation that has the potential to put her in this type of school without me needing to go bankrupt. But I am scared to admit to my husband or my parents or my friends or the current school that the special school is what I really want for Princess. They fear a stigma, or an inability to re-assimilate to the life we’d planned for her (e.g., attendance at the private school at which her dad is the band director). I fear that the adjustment to a new group of students and a new school will be more anxiety-provoking than returning to her current situation, although she reverts to the harmful behaviors when she is back at school for more than a few weeks.

The more I research and the more I learn, the less I really know about any of this.

(Cross posted on Band Back Together)

So very, very tired

October 7th, 2010

I am tired of holding on, and worried about how much longer I can keep doing what I am doing. Princess is still out of school, but in a holding pattern. The doctors do not feel as though she can return to school, and I agree. We do not know what the problem is, whether the overwhelming anxiety is school in general or that school in particular. So she is home, or at her grandparents, each day while we figure out what comes next.

The treatment coordinator at our practice began the process of looking for an partial hospitalization program after Princess’ appointment last Tuesday. On Thursday they told us that there was no space currently, but that a space might open this week. Yesterday I got a call that a space had opened up but that I needed to bring her in before her scheduled group therapy session (we’ve reverted to the 5:00-7:00 program every night until we can get her into a hospital program) because the hospital requires a referral evalation that is no more than 24 hours old,and the paperwork needed to be in hand by 4:00. So, the assessment from Friday’s session was no longer valid and last night’s assessment would have been too late to be processed. I left work at 1:00 so I could pick Princess and make one of the open spots. I called the hospital around 4:15 to verify what time I was supposed to bring Princess this morning, only to be told that they  had no idea what I was talking about and that no spaces were available. When I arrived at her group therapy appointment, our treatment coordinator told me that she submitted the paperwork as agreed only to be informed that the space promised a few hours earlier was no longer there. Best case scenario is an opening on Thursday or Friday, but it’s more likely to be some time next week. And so we wait some more, trying not to be overwhelmed by the concern that each day out of a therapeutic and educational routine means more difficulty adjusting back into the routine that one would expect for a 12 year old girl.

I was home with Princess on Wednesday, and she while trying to reason her out of her room in order to get her to tell me what was wrong (and so I could watch her carefully), the phone rang from the boys’ school. The principal informed me that Hoss had run away from the property and that the police had to be called. She expressed her intention of keeping Hoss in the school building under the care of his gang (principal, VP, counselor, school psychologist, special ed team members, whoever) until something close to normal pick up time. She wanted to let me focus on Princess without needing to also watch Hoss. A few minutes later, the school called again, saying that the police were requiring me to come. In the time it took me to dry my tears, get my shoes on, close up the house and get myself and my daughter into the car, the police officer called to exhort me to get to the school. I arrived and was judged harshly by an officer who was aghast that I was initially not going to come pick Hoss up, who said he was taking Hoss to the emergency room because he had expressed a desire to end his life. Despite the professional opinions of the psychologist, counselor and school principal who administered the suicide threat assessment (a group who understand that his “I hate my life. I wish someone would just kill me” is not actually a true suicidal ideation), the officer took my son to the hospital in a patrol car. I was not allowed to leave until the mobile crisis team dispatched by the county arrived to speak to me. After some begging on my part, the officer allowed the counselor to go to the ER until my husband could get there.  The social worker and psychiatrist at the ER released my son within a few hours, noting that he was not a threat to himself or to others.

I am playing phone tag with my prospective new doctor, in hopes of getting an appointment so I can tell her about the mounting crises that make up my daily life and so I can try to get some relief. I called her on Thursday, but missed her return call at lunchtime on Friday. I called Friday night and left my work number as well as my cell and home, and have not heard back, so I am calling again. The mobile crisis team last Wednesday (a pair of neo-hippies who meant well but had nothing to offer me that I didn’t already have in place) listened to my account of the things that are happening and the things I am going to try to mitigate the turmoil, and they told me that I am doing all the right things. But doing all the right things does not seem to be making anything get better. I shudder to think of what our lives would be right now if I were doing the wrong things.

The energy it takes to get through my day is increasing. The reserves I have are decreasing. Something has got to give very soon.

Right back where we started from

September 24th, 2010

Princess is back in the ER right now. She ran away from the school building today, shades of her brother from a few years ago. The counselor saw her leave, followed her out, and managed to stop her at the curb, just before she decided to run into traffic. She says she wanted to just run and run and let herself get hit.

Today was not one of her days in group therapy, now that she has dropped down to three days per week. Last night she told the doctor she was mostly feeling better, fewer thoughts of hurting herself and more ability to keep the thoughts in perspective and talk herself down when the thoughts do come. Tonight the doctor insisted that she be evaluated by the ER doctors before being allowed to come to group tomorrow.

She says she feels safe calm and comfortable when she is in the hospital, but she does not want to be away from home and back in an inpatient program. She says she feels calm and comfortable when she is in group. She says she feels calm and comfortable when she speaks with her LCSW on weekends. She says she feels calm and comfortable at home. At school, she usually feels calm and comfortable at the beforecare program, and the aftercare program, and first period religion class, and second period math class and third period social studies and at lunch.  During these times she can handle feeling sad or anxious or confused when those feelings come.

She does not feel this at recess. Her friends with whom she eats lunch like to play ball, which she does not.  She feels that she does not have a place or an activity or a presence that feels calm and comfortable.  She cannot or will not articulate whether her afternoon classes make her feel tense and uncomfortable.

Inpatient programs and intensive group therapy and one-to-one counseling sessions are not helping her navigate her life as it stands right now. I want her to be safe, but I do not know what tools she needs to make this happen. I’ve spent too many hours or days or weeks being the one to figure out the next move and letting everyone else know what needs done, but those solutions are not working and I no longer have the tools to figure out the next move.

When we have weathered this crisis, I am going to speak to my own doctor. I am going to request that he write me a prescription for an SSRI, but not the one I used previously because it made me tired and nauseated and I think that there are others that can help me. I am the mother of two (or maybe three) special needs children, and the wife of a man who forgets that he is not the only person with a stressful job, and the person at our office who takes care of the administrative side of the governance functions as well as taking care of the people who needs to be coddled. I can no longer be all those things without some help.

It matters not how much you fall, but rather how often you get back up

September 3rd, 2010

Princess is back in the hospital. School started on August 25, and I have been monitoring her homework (checking her agenda book and comparing it to the completed work in her binder) and asking her about her school day and doing my best to keep the line of communication open. She met with her therapist on the Saturday before school started and again this past Saturday so she could first prepare herself to return to school and then process the first (partial) week of school to assess its success. Everything seemed fine.

When I picked Princess up from her aftercare program on Tuesday, I had a message that the school counselor wanted to see me. Princess and I gathered her things and sat down in the counselor’s office to talk. The counselor relayed that another student came to her to say that Princess had indicated that she was planning to bring a knife to school for the purpose of stabbing herself or cutting her throat. She’s never articulated a plan before, and never expressed thoughts so boldly violent. The counselor advised me that she would need written confirmation from some mental health professional regarding Princess’ abililty to return to class.

We made an appointment with the therapist, and Princess was vehement in saying she did not want to go back to the hospital. She later had an outburst that culminated in her locking herself in the bathroom, refusing to speak to me, and I told her through the door that if I could not get the key to work, I would call 911 and have them break the door down and take her to the ER in an ambulance. She came out, and finally admitted that her thoughts were too overwhelming to handle alone, and she thought she needed to go back to the hospital.

We arrived at the pediatric ER around 2:00. We met with the intake nurses and pediatrician and social worker. We waited for word about which hospital had a bed and would accept her into the program. I called and texted my husband (who was home with the boys) and my parents and my siblings with updates through the night. The food service people delivered Princess’ dinner to the adult ER, so it was cold by the time we hunted it down, but she ate it anyway. They fixed another dinner for her, so I ended up getting to eat something, too. The ambulance transport came just before midnight. I took my car and agreed to meet them at the hospital.

About halfway to the hospital, my car blew a tire. I sat at the side of the highway, sobbing so hard I thought I would vomit. My  husband called the pediatric ER staff, who called the transport company, who contacted the ambulance driver to  have him come back to get me. Another bus from the same transport company arrived a few minutes after we did, so the drivers kept me distracted with their chatter. I barely remember filling out the paperwork for the intake. The coordinator on the unit asked me if I had a ride home, and I asked her to help me call a cab. She did one better- she arranged for a transport voucher for me, since I wasn’t sure I had enough cash on me to pay for the 40 minute ride home.

I got about 3 hours of sleep before taking the boys to school and coming into the office. My boss is wonderfully understanding and supportive, and is allowing me to make my schedule day by day depending on what I feel I need. I don’t know what it is I need, though.

I am still standing, and I know that Princess is getting the help she needs. This is a different hospital than the one she was in during May. That program seemed to work then, but the doctor’s willingness to dismiss my suspicions of a biploar disorder bothered me. This hospital seems more open to the possibility that there is more going on than her anxiety/depression. And we will once again find our light at the end of the tunnel

Just In Time For Valentine’s Day: The Suckiest Wife Ever

February 11th, 2009

Yeah, hi.  That’s me.  I know I’ve been away for a while, but what better occasion for a return than to tell the world just how horrible a person I am?

My bipolar husband, despite doing all the right things, has been deep, deep, deep in an atypical (for him) depressive cycle for at least the last six months.  It’s actually probably lasted longer, but that’s about how long it’s been debilitating to the point that he can’t work or maintain normal function.  I won’t go into details about everything that’s been tried for him so far, but let’s just say it’s been a LOT.  And that he has cooperated whole-heartedly with every treatment, regardless of how horrible the side-effects may be, because he wants his life back.  Badly.

You know, depression has never been the bugaboo for us.  It’s always been the threat of a manic episode that loomed nearby, and kept us ever-vigilant for the slightest symptoms and early-warning signs.  It’s mania that has scared the stuffing out of us both, because we both know that a good, strong florid mania is capable of ruining our marriage and our family, despite whatever good intentions we may have.  Mania has always been, for us, the Other in our marriage–a beast to fight and fear.  I even used to joke, “Where is the other pole in this bipolar disorder?  I think we could use a swing toward depression right now!”

Ha, ha.  It’s not funny any more.  I am so sorry, but I really had no idea.  I thought I did, which now is very nearly hilarious–I thought I “got it.”  I didn’t.

I did not anticipate, in my wildest dreams, the depth, the blackness, the despair of this depression.  That it could affect my brilliant spouse’s cognitive abilities and physical coordination.  It’s like a malicious, transient form of brain damage, really, and stunning in its power.

And my response to it has been, well…less than stellar, at least lately.  I have been so wrapped up, in the years since the diagnosis, in watching for and combating the manic side of the spectrum, that the depression caught me completely flat-footed.  My troops were all amassed at the Hypomanic Border, and the few straggling sentries and scouts who brought reports from Depressive Kingdom were brushed off as insignificant, or addled.  If only I’d known.

Who knew–turns out that my moods cycle, too.  And that cycle, in regard to my mentally ill spouse, appears to go something like this: Patience, understanding, patience, kindness, patience, concern, patience, frustration, worry, frustration, resentment, impatience, fear, deep frustration, RIP YOUR HEAD OFF AND DISEMBOWEL YOU WITH UNKIND WORDS.  Nice, huh?  I honestly, and truly suck.

That’s right–when a loved one is down lower than you can even imagine being, why not give him a good swift kick, you know, as long as he’s down there?  Go ahead, vent your spleen–after all, you have feelings, too, right?  And you’ve bottled this up for so long, why save it for therapy?  I’m sure that the person who is clinging to you like the only life-raft in a raging sea of misery won’t mind ONE BIT.  Let him know just how displeased you are with this whole depression thing, because almost certainly he’s been doing it ON PURPOSE, and just needs to feel your wrath, resentment, and maybe even a smidgen of contempt, to snap right on out of it, get back to work, smile, and be happy!  RIGHT?

I feel about two inches tall, and I’m so, so sorry.  I wish that what I’d done was to recognize and appreciate the things that he is amazingly ABLE to do right now, even through a thick black fog.  That is true courage, and I DO see it.

Going back to my best attempt at being positive (which is where I should’ve stayed all along, more’s the pity), we’ve pushed the doctors to make some fairly radical (for us) and frightening  (for us) changes in medication regimen, and I can’t help but think that something’s going to happen soon.  It may be too much, but at this point, anything different will be welcome, at least at first.

One of two mood stabilizers has been removed entirely, as has the benzodiazepine.  This will be the first time since diagnosis without Depakote and Klonopin.  This is terrifying.  To exponentially enhance our trepidation, factor in a huge increase in anti-depressant dosage.  Now, realize that this is exactly the time of year when the “ramping up” usually begins, and you have a real “YIKES” element going.

Of course, this is all pretty much what we asked for.  Much the same way ECT jolts the brain out of a repetitive, destructive pattern, we’re hoping to shake up the med cocktail SO much, while at the same time hopefully harnessing some of that very manic energy that we normally fear so greatly every spring, that my dear husband’s brain will HAVE to let go, and emerge from the depths.  I’m just hoping that we have time, once the climb begins in earnest, to get the lid on before it’s too late.

I’m also hoping to be less of a jerk about the whole thing.

The Ones

November 19th, 2008

Part of the process of falling in love, one person makes an agreement with their object of affection, pledging their undying loyalty and love.

One agrees to shelter the other from the storms of life.  They will prove their love by fighting the others battles, standing up to the monsters and vowing to never leave their side.  Loyalty becomes an extreme sport.

You’ve heard their history, their stories, the failed relationships in the past and you know without a doubt that you can be the one person they can count on.  You will be the one to fix them.

In that very moment, the ones who are willing to seal the deal, in blood if necessary, in order to prove themselves, do so without one word spoken.

This is an agreement made without specific words from the other person involved.  The agreement is made through body language, hopes and dreams, whispers of love in the heat of passion.

Sadly, neither party realizes this at the time, they do not realize that in reality, they are crippling the other person.  Cutting them off at the knees, not allowing them to fully realize their own human experience.

I suspect we are not meant to be aware of such things, why else do we experience the release of heavy chemicals from our very own bodies during the early stages of love.

You do not realize, until years later there actually were red flags but something in your brain pushed them to the side.  They were there, they are always there.  They are best viewed using your hindsight lenses.

We seek to protect our beloved, believing it to be the honorable thing to do, in order to prove ourselves to them.  In order to prove just how much we love the other person.

Until one day you are sitting in a comfortable chair telling someone the full story, not understanding how it came to this.  Realizing that you can no longer carry their burdens, and it was never your job to begin with.

The love you used to cloak your intended with was merely a reflection of your very own lack of needs.  You realize that those brave promises you made for the one you loved, were in reality the proclamations your heart longed for.  You, were the one that needed saving.

We project all of this onto our partners, our husbands, and our wives.  We act out the very role we wish someone would provide for us.  We love them in the manner in which we want to be loved.

And, they do the same.

When You Can’t Win For Losing

May 17th, 2008

It’s been a rough spring around our house. But at the same time, it’s been better than each one before it. So I feel like I should be grateful, and I feel guilty for feeling emotionally exhausted all the time, but there you have it. I feel what I feel, and it is what it is.

I belong to some support groups for “significant others” of people with bipolar disorder, and I can tell you from years of observation and experience that, among our ranks, May is a rough, rough month. In a bit of black humor, someone somewhere began referring to this month as “May-NIA,” and that stuck. Even my own spouse, who is faithful and dedicated to his mental wellness, and takes his meds and tries to stick to healthy routines, has periods of “breakthrough” hypomania in the spring. Do what we will, the force of springtime will not be denied. Every year I’m struck with jealousy over other people’s rejoicing in the coming of spring…they’re planning their flowerbeds, washing their windows, de-winterizing their mowers, while I’m monitoring the bank account, trying to keep things quiet, and generally just scattering a fresh layer of eggshells across the floor for us to walk on. I dread spring. And to be honest, I resent having to feel that way.

In the beginning of our journey with this illness, post-diagnosis, I lived in a state of wary watchfulness. In the first year, there was a significant relapse, so after that I was pretty much in constant readiness, watching for that sign that would indicate that everything was about to go south again. If he was 5 minutes late, or didn’t answer his cell phone one time, I just knew that “it was happening again;” that he’d disappeared, he’d “run,” and that, since that was the line I drew in the sand when we decided to stick this thing out together, that our marriage would, consequently, be over. I literally went through this entire thought process on a regular basis. It was a long, long time before I could make myself continue to breathe normally in the face of even a small unknown. But I learned, as time went on, how to focus on myself, to trust myself, and to breathe.

As more time went by with no full-blown episodes, something odd happened. I did manage to stop living mentally perched on the precipice of disaster. I remembered who I was before I ever tangled with bipolar disorder. I realized that I’m smart (enough), capable (enough), and tough (enough) to handle whatever it could throw at me. And with that knowledge, I relaxed. A lot. But I didn’t anticipate what came next–what has been happening for the last couple of years.

My husband has expressed to me, often, the irony of managing a mental illness well–that is, that since he stays on top of his medication regimen, sees his doctor regularly, performs well at a regular job, etc., that people tend to “forget” that he has bipolar disorder. Then, when there is an episode of breakthrough depression or hypomania, the reaction is one of disappointment, like, “I thought you had this thing beat.” No one understands that it’s an ongoing, daily battle, and that there is no magic pill that’s going to work all the time. We “tweak” his med cocktail once or twice a year, at the very minimum.

I have caught myself falling victim to this same phenomenon, in a way, and I’m not sure it’s any better than the way I used to live. Instead of being constantly on edge, expecting things to fall apart any second, I now let even a couple of weeks of good times lull me into near-total complacency, so that, when there is a bump in the road, as there most assuredly always will be, I’m left gobsmacked, the rug pulled entirely out from under my happy little world. Every time this happens, I feel so stupid, because, of course, I knew better. But it is so altogether soul-wearying to live in that watchtower, that sometimes I just desperately want to come down for a while. To stay up there, watching, watching, watching, is to admit defeat, in a way…but more than that, that sort of life is really no life to have. It’s not just emotionally tiring; I can feel it chipping away at my physical health, with all sorts of symptoms I never knew before I met bipolar disorder, like anxiety, panic, depression, irritable bowel, nausea…this disease that I don’t even have is shortening my life.

But the alternative–life without my husband? No, that’s no life for me, either. Somewhere, somehow, there must be a way to find balance. I wish this post were more about answers.