A Good Week!

Considering this is my first official month of retirement, it's been awfully busy.  But we're getting so much done - it's both exhausting and exhilarating.  I have health benefits through the end of the month, so all medical, dental and vision check ups have been in full swing.  Vaccinations, fillings, crowns . . . we're happy to be getting that stuff done.  Strange, I know.

But the best news for now is that I had an intake with the county psychiatrist to push through an evaluation for Lily in connection with her IEP.  This professional was wonderful - insightful, patient, thorough.  She indicated she'd push for an extradited process because she knows we're trying to get Lily's psychiatric care set up for continuity as we change health plans on August 1.  She offered to help.  Offered.  I went a little crazy and got a mocha frappuccino to celebrate on my way home!

Being busy has been a blessing in some ways.  Lily will be on crutches for another 4 weeks, she needs to be kept occupied, and I'm dying to get out of the house.  We've been so busy running off to appointments that we haven't had time to dwell on any of that.    I still have creative/summery things I'd like to do before we're all back in school, but I'll have to be patient about fitting in those fun projects.

Lily is more calm these days, perhaps a result of the introduction of Risperdal as we titrate down on Zyprexa.  She still gets anxious about what school she'll go to this fall, she wants answers now.  Gee, where'd she get that?

What I know for sure, is that in this moment, on this day, we're OK.  I'll take that.

Freedom As Motivator

Well.  We're floundering again.  Lily sprained her foot and is prohibited from putting any weight on said foot for 6 weeks.  We're halfway through, but the restrictions are making all of us bonkers. 

I was able to get a used wheelchair for longer treks as Lily can't manage crutches for more than short distances.  I imagined long walks on the cliffs, museum visits, getting out and about.  But it's out of Lily's comfort zone.  When outdoors, Lily becomes hysterical if she sees bees or other flying insects nearby.

Lily likes shopping.  She's up for a trip to the mall, and loves to go to the market.  Here's the but.  She doesn't like to wheel herself around in her wheelchair.  It's not easy, so I've been pushing the chair when we're out.  Which is mostly okay, unless I also am managing a shopping cart.  I'm a Dr. Seuss push-me-pull-me, live action model.  The other shoppers don't appreciate my predicament.  I'm in their way. 

My crankiness meter is on the upswing.  My bad mood doesn't help Lily.

So it's easier to stay home.  But, here comes another but, I'm lousy at setting healthy boundaries for my kids.  So, I fetch and open doors and turn lights off and on all day and well into the night.  Crutches plus OCD equals a level of disability I'm not prepared for.  I'm awful at this.

It comes down to expectations.  I had expectations of afternoons at the beach, excursions to the public tennis courts and swimming pool, visits to the library and lots of walking.  Notice that most of those activities are outdoors, because I love being outside.  I'm an outie.  Lily is an innie.  These expectations are unrealistic.  I do however, believe in the power of negotiation, and an occasional parent directive for the well being of all.

Positive expectations for Lily's behavior are also in order.  We're working on putting those boundaries in place.  She can't carry something heavy while navigating on crutches, but she can open household doors and turn lights off and on.  She has disinfectant wipes and rubber gloves to manage her germ phobias.  She's trying.

The efforts include modifying behavior towards others.  Lily is always hardest on her younger brother.  I've been consistently stopping her when she's unkind or unreasonable.  She gets pretty angry and needs an outlet, so it's time to get creative again.  Lily is extremely verbal, so a new journal may be in order.  I obviously believe in the power of the written word when the need to vent arises. 

Because she's fourteen, I run the risk of discouraging her by suggesting something, but I don't know how to manage this without being direct.  But this is a great tool, and she can be in complete control of what she expresses on the paper, no limits.  Maybe that will appeal to her because it would be private and uncensored.  Let freedom ring.

Didn't Lose It

Fighting back after our recent difficulties.  The layers of what goes on are sometimes baffling, but interesting.  Although I'd like clear cut answers, I am beginning to accept that there are none.  Part of that acceptance comes from understanding that I need to forge a middle ground between professional advice, or lack of advice, and my own instincts.  For the past year, I've been too afraid to recognize or follow my instincts.  I'm not a professional, my knowledge about these issues is minimal.  But in the absence of clear directives, we have waffled about and the uncertainty goes against my maternal nature.  Or maybe that's really just my personal need to have a greater level of control, maternal or otherwise.

I'm ineffective when I'm uncertain.  That doesn't serve Lily, or the rest of us.  So I'm making changes.  Pretty big ones.  But the actions feel so good, and I hope they're the right moves; I'm so happy to be deciding something and forging a plan.

Lily is still too unstable to leave alone, and I have been unable to find adequate care in our small city.  We're buried under rising debt.  Having to make daily decisions about calling in to the office because I can't be there undoes me.  My amazing manager knows I won't be in, but I feel the obligation keenly, and not being able to meet my work obligations frustrates me to no end.  It feels like an unending failure.

So I'm taking the pressure off, I'm retiring.  My small cash out will be enough to keep us afloat during this next year.  Having the means to deal with creditors means a great deal to me.  I am determined to meet my obligations.  And by handling those two issues, my feelings about work and debt, I free up energy to deal with Lily's health, my own health, and family relationships.

It's certainly a bit scary to let go of my connection to work and my benefits.  But I have a plan, have been receiving good advice, and believe this can work.  What we've been doing doesn't work anyway.

Control may be an illusion, but it's one I hold dear.  Viva la Control!

At What Point Do You Lose Your Mind?

Am I done yet?  I'm sure getting close.  Lily is still very unstable.  Day to day, she can bring up invisible people, auditory or visual hallucinations, periodic anxiety, and always, always, the feeling of spiders on her skin.  She freaks out, forgive the layman term, and wants me to look and make sure there are no spiders there.  Some days are calmer, some are much more distressing.

So, at what point do I lose my mind?  I'm in week four of twenty four - seven care.  I'm getting little sleep.  I don't always shower.  I'm suffering from  a deficiency of adult contact.  No work.  No paycheck. No control.  I really hate that last part.  Control has been a close friend through the challenges of my life.

Do I sound callous yet?  Lily is suffering.  But several people, some of them professionals, have suggested that we examine the possibility of manipulation.  Not that some of what she experiences isn't genuine, I absolutely know there is real suffering going on.  But why does she pull it cheerfully together when we're doing what she wants?  Like shopping for her.  Or setting up a get together with her friends.

And why does she have a rapid deterioration of well being and an uptick in symptoms when we're doing something she doesn't like?  Is this part and parcel of her illness?  On what level?  How can I know that?  When I'm trying to explain to her that we need to approach a situation differently, that I need a short visit with a friend or that I'm going to cook a meal with meat, or watch  or listen to something she hasn't chosen, why does she immediately start having a frightening hallucination?  Does positive motivation truly allay her symptoms, and does any level of stress truly put her at risk of a psychotic episode?

I realize I'm revisiting a topic I've touched on before.  I suppose I'll keep coming back to this until I have a better understanding of what the hell I'm doing.  Or absolutely lose my mind.

Perseverence

Lily is calming down, after a storm of psychosis stew.  Yeah - mixing metaphors again, chalk it up to fatigue.  I hang in while we're in crisis, and then I sort of fold in on myself for a day or two or three.

Lily is still feeling spiders all over her skin at various times throughout the day, but her disorientation is waning, as are the confused thoughts about strange and random things.  She is taking a bit more Zyprexa - not preferable in many ways, but better than experiencing high levels of psychosis.  She hasn't complained about her feet and hands since we reduced the Topomax, and I'm not going to ask because I don't want to remind her and stir up the symptoms.

I still feel so stymied about resources available to help us manage on a more normal level.  I've focused my search on our town, but clearly need to push to find services in neighboring cities.  The services I'm finding in our small city seem to be geared towards probation support for juveniles.  That's not what we need.  As long as I can devote my time, 24 - 7, I can keep Lily safe.  The difficulty with that is that I also need to work, take care of our home, shopping, paperwork, and care for my younger son.  I can't do it all.  How does anyone manage this?

I don't have a way to pay for respite care, if I could find anyone here qualified to provide it.  I know, I'm whining, but I need to find a way to get on an even keel.  For the first few months, I kept thinking we'd get Lily's meds balanced so that she was functioning pretty normally, but 11 months in, we aren't there.

I'm telling you, I'm about ready to call my congressman.  Think that will help?

I suppose I really just need to knuckle down and figure it out.  I've been making calls, but just not to the right folks yet.  Perseverence - perseverence -perseverence.  I can do this.  I can.  Just one more call, and then another, until I find what we need.  It has to be out there.

A Turn for the Worse

Something's wrong - and I don't know what it is.  Lily is getting worse every day - agitated, burning and itching on hands and feet, and strange thoughts she can't control.  She says they're not hallucinations, but the thoughts are disturbing and upsetting to her.  Tie dyed circles dancing in her head folllowed by tie dyed rain, looking for support for a baby and not being able to find it, all manner of mixed up events.  She's feeling spinning tunnels in her head, dizziness, akathesia.

I'll call Doc D in the morning.  I'm scared.  Is this a downward spiral into psychosis, is it neurological, is it a brain tumor?  I'm afraid to sleep, I want to be right there if she needs me again.

Update - Monday, 8:45 AM

Of course it's not a brain tumor - that was my dark of night mother worry.  I am worried about her.  She got up and was still confused and experiencing thoughts about Invisible People.  She's also confused about small tasks, like how to put berries in a bowl for breakfast.  She had a rough night, anxiety, spinning feeling in her head, akathesia.  I've left a message for Doc D.

Ch ch ch changes . . .

Well there is change, and then there is change.  In my last post, I ended saying it was time for a change.  Be careful what you wish for.  We really did, do, need a change, but the changes we experienced this week were not what I had in mind.

In a session with Doc D last week I expressed my desires for therapy and/or med changes to help Lily become more functional in the real world.  We agreed to pursue a more focused approach to dealing with her OCD issues, including an effort to modify her meds.  Lily wanted to try Abilify again, becuse she wants to get off the Zyprexa due to the appetite/weight gain issues.  My vote is for a moderate increase in the Lamictal, but we agreed to honor Lily's request and re-introduce Abilify.

On a Wednesday evening we added  5 mg of Abilify to her med regimen.  Over the next 4 days, Lily became increasingly more agitated, until the psychosis returned and blew us out of the water on Monday.  Lily fought with and was frightened of Invisible People all day.  She wanted to flee the house because the IP were pushing a nearby industrial building into out townhome and she was afraid we'd get crushed.  What can sound like a comedy sketch is so unfunny in real life.

After a phone conversation with Doc D, we agreed to discontinue the Abilify.  During the last few days, Lily's psychosis has lessened as the med has gradually left her system.  We've used more Ativan than usual, and resorted to Klonopin one day, but she is improving.  She is having some discomfort in her feet and hands, and we don't know if that's related to any of the events of the week.  It could just be one more somatic issue, but it is adding to a stressful week.

I'm having a hard time letting go of my illusions about normalcy.  I get so tired of hearing Lily's many complaints, and then I'm ashamed because I think about how horrible it all is for her.  We've made progress, Lily is better than she was last fall, but I want so much more, for all of us.  I want 30 minutes to take a walk in the sun, an afternoon at the beach, the freedom to go to a restaurant for dinner, with no drama.

I want to listen to a song without having Lily flip out because she doesn't like the beat, or she hears "ck" words.  I want to be able to be in the yard without Lily yelling every couple of minutes because she wants me inside with her.  I want, I want, I want . . .

I know that Lily wants too, different things than I do.  I'd wish her OCD stuff away.  Lily would like to have the anxiety inducing stimulus disappear.  No meat, no "ck" words, no typing sounds, no bees, no dirty hands on her younger brother, no sounds from her younger brother.

I know Lily would love to have peace, positive interactions with family and friends, physical comfort, more laughter.

I know it's my job to get her enough help to be able to participate more fully and comfortably in daily life.  It also happens to be my job to get in 20 hours a week at my job, provide healthy physical and emotional care for her younger brother, get the bills paid, and maintain relationships with my other wonderful children, who aren't children any longer.  But they're no less important.  Less needy, but not without need.  Even grown kids need mom, thank goodness.

So clearly, I'm not at peace about where we are in this process.  But I'm trying.  Just like Lily.