Not-so-happy Holidays

I really wish I could enjoy the holiday season. I really do. But I feel like I'm walking blind in a minefield of anxiety triggers. I just want to hibernate until sometime in mid-January.

In the past I have survived the holiday season by giving to charities and giving charity gifts to others. The high I would get from giving to someone less fortunate than me and spreading the word about causes and charities would help overcome the anxiety and bad triggers. But thanks to the still-pending Disability claim I have absolutely no money this year - I have $1.85 in my wallet and a frozen bank account - so my charity giving didn't happen. I wasn't able to give anything. I sent e-mail cards and was able to hand-make 2 things and that's it. So on top of the usual anxiety triggers I also have the overwhelming feeling of being useless and ungrateful because I haven't given any gifts at all.

Yes, I know all this guilt and all is self-imposed. And until this year I hadn't realized how much I had based my self-worth on how much I could give to others. If I'm not giving, I'm not worth anything. The voices in my head have basically been chanting that in my head.

And without the high of giving to drown it out, I have been a giant target for anxiety targets I didn't even know were there. I get outraged over the rampant consumerism and the buy, buy, buy, give me the biggest present ever mentality of most of America. It's all about getting the biggest and coolest thing for the cheapest price ever. I can hardly watch TV because of all the commercials about getting cars, big-screen TVs and expensive gaming systems. My parents, especially my mom, feed into that. They talk a good line about keeping it simple and saving money and only giving meaningful gifts. Then they insist on having at least 3 presents for each grandchild and there was a pile of stuff for each other and for me. Yes, I appreciate the new clothes, but I would have been happy with just one book or a pair of fuzzy socks.

But as much as I hate the consumerism of the season, I hate the die-hard Christians even more. I feel like they're jamming Christianity down my throat and I hate it. I have had to bite my tongue several times to stop myself from going on a rant about the Pagan roots of Christmas. My parents have had 3 different groups over from the LDS Church giving a message about the true reason for Christmas. I just want to scream that most of it is bullshit. Most of the Christmas symbols, the timing of the celebration, even the mythology of a virgin birth and a baby laid in a manger existed long before Christians started celebrating the Mass of Christ. But none of them want to hear that and since most of my family - especially my mother - is very devout, it would just piss them off.

And then there is the family get-togethers. I barely survived Thanksgiving with Tammy and her 4 girls visiting. I was too overwhelmed by having so many people in the house I could barely leave my room, and when I did no-one would talk to me. Now we have James coming with his 5 boys. I've been stressed about that for weeks because he kept changing the dates of when he was coming, which in my mind is rude as hell. When you're visiting anyone with a crew of 7, including 5 boys ages 9 months to 11 years, it is thoughtless and rude to not give the people you're visiting time to prepare. Hell, just making sure there's enough room in the living room for them to sleep is hard enough, let alone making sure there is enough food in the house. And they are LOUD, so I need extra meds to get through their visits. Sad, but true. And I am trying my hardest not to freak out over them visiting.

And through all of this I'm expected to be happy and cheerful, because that is how people are supposed to be over the holidays. I am so drugged right now I can barely put a sentence together speaking and I'm trying to blank out the horror that is The Mormon Tabernacle Choir Christmas Album, but I'm still supposed to have a smile on my face. Fuck that. Maybe I should just have my Dad pick up a bunch of energy bars and some jugs of water and I'll just hide in my room for 2 days. No one will want to talk to me anyway, so I might as well.

Where am I?

Yes, it has been far too long since I've written in this. I didn't want to sound whiny. Note to self: That's kind of the idea of this blog. I'm supposed to be able to say what I want without worrying about whether it sounds whiny, pathetic, crazy, deranged or whatever.

I absolutely have no idea how I am doing or where I am. OK, I literally know where I am, but mentally I am wandering lost. I've tried to move on and take steps, but I am standing in a mental wasteland and I have no idea which direction I should, can or will go. Instead I stand and turn in a circle and wonder what the fuck I'm supposed to do.

I finally tried to come to grips with the fact that I will never be independent again. That almost landed me in the hospital again. I have ALWAYS been independent, even as a child, and it is killing me that I will have to depend on someone else for the rest of my life. I was finally able to get to the point of getting rid of a lot of my stuff in the garage, all that stuff that I would need if I were to get an apartment or house on my own. The washer and dryer went to my brother, James. The couch went to my sister Kristin. Two side tables, my big mirror and a bunch of other household stuff went to the Re-Store. My dad found a way to fit two of my bookcases in my bedroom and I spent a lot of time going through all my books. It was hard because not all of them would fit and I had to get rid of a lot of them.

All of this has added stress and we all know I don't handle stress well. I started hallucinating badly at one point despite the meds. I was constantly nauseated and had diarrhea (I know; gross) and I was bleeding and had constant cramps. Dr. Nielson, my psychiatrist, increased my meds for a couple of weeks and sent me to the clinic's OB-GYN, Dr. Johnson. She was great and agreed that I had a severe hormone imbalance because the stress had set of my PCOS. She said the best bet was to get rid of my cycle altogether and she put me on Depo shots. Things have leveled out a bit - I'm back down to my regular dosage on my anti-psychotics - but my body is still adjusting to the Depo so I'm still having some fluctuations. Dr. Johnson had said it would take at least 3 months for my body to adjust to the Depo so I'm not worried too much yet, but I wish the hormone fluxes would just GO AWAY!

And now it's the holidays. Welcome extra stress. Fortunately Dr. Nielson is having me be proactive and increase my meds before and during the visits from family. I just can't handle the chaos of having all those kids running around and the extra people in the house.

I really want to think I'm doing better, but I'm really not. Today is a good example of how imbalanced I still am. I woke up from an unsettling dream, which always takes a while to shake off. My parents were gone holiday shopping again and I looked at the calendar and the housekeeper was scheduled to arrive in 30 minutes. I completely freaked. I know Jennifer - hell, I'm the one who gave her name to my mom - but the idea of being alone in the house with some other person made me panic. As always, I knew logically that it was ridiculous to be worried about it and that just made it worse. I HATE having my emotions or instincts override logic, although you'd think I'd be used to it by now. It is now 3 hours later and I'm still trying to get myself to calm down.

It scares me that the meds I'm on might not be good enough or be doing what I need them to. There is nothing more terrifying than going off of meds and then trying another new one that may or may not work. I have had so many that made things worse and the time in between the meds is absolute hell. I'm terrified that we might need to change, though. Because right now I'm really not where I need to be. I am lost.

The eye of the storm

My mind has been a dark place lately. OK, darker than normal. The problem is that my hospital stay and the heavy-duty drugs they gave me there blocked out everything. I basically locked the voices, the delusions, the demons and the angels out of my "house" and hunkered down to weather the storm. At first there was hardly a whisper from the outside. But then I went off the stronger meds and went on something that let me actually vaguely function and the wind picked up.

I spent several of my younger years in Nebraska and I remember hunkering in the dark beneath the stairs as a tornado roared past. The hail pounded against the side of the house and the wind sounded to my young mind like dragon doing its best to tear the house from its foundation. There was nothing we could do but huddle there and wait to see if it would hit us or pass us by.

Well, this is what my mind became, only I didn't have my family in the dark basement to reassure me and tell me everything was OK. They were on the outside with the tornado winds, the dragons, the demons and the killer hailstones. I don't think I've ever been more afraid of my own mind. I knew there were friendly voices in that storm and I was blocking them out with the bad, but it was all or nothing. I had no idea how to open a window or a door without being completely lost. But most frightening of all was that cracks started to form in the walls and I had no idea what to do.

Of course, through all this I hid it from everyone. Over the years I have learned my lessons too well and I can have a full-on panic attack without anyone else noticing. I as lying to myself that everything was OK because the wall were holding, and so I lied to my family, my doctor and my therapist that everything was OK. Fortunately, the cracks became too wide for me to ignore anymore. The screaming wind made me unable to function. So I finally told my psychiatrist. We tried adding another medication - something I hate doing but I was desperate - and it has helped a lot. The wind started to calm and I started being able to interact with other people a little better.

Last night I finally dared to open the door. Nothing came rushing in and the landscape "outside" was messy but not destroyed. My mind hadn't fared as well. That dream self, the part of me that travels through my delusions, emerged like a rabid beast. I had trapped myself in the dark and cold for too long and I couldn't tell which hallucinations and voices were friends and which weren't. I wanted to attack everything. I finally went back inside, in the dark, crumbling house. I did leave the door open, though. And there is some light shining in.

I don't know if the storm is over or if this is just the calm at the eye. But at least for the moment at least I can try to make peace with myself again.

That moment

I keep trying to find it, to remember it. I keep trying to find that moment when the enthusiasm changed to reluctance, when the excitement changed to fear. But I just can't find it. I don't know when it happened or how. I just know it did.

I know some of the whys of it. I know a lot of my fear and anxiety come from being in constant pain and not being able to do a lot of the things I used to be able to. But I lived with the pain for a long time and was still able to be strong and do things. I still wasn't afraid.

I need to know. I need to know when that moment was and what caused it. Because I don't want to be afraid any more.

This isn't the kind of fear or anxiety that can be brushed off with a few deep breaths. I was a pro at dealing with that. That's the fear you get before getting on a roller coaster or speaking before a crowd. You look that fear in the face and laugh at it and you go on, and the fear turns into exhilaration. No, this is the kind of fear that paralyzes you. It gets into the pit of your stomach and makes you absolutely sick. It makes your heart race and your muscles tremble and shake. Your mind races and you can't think and no amount of deep breathing or positive mantras will make it go away.

Somewhere in my experiences, in my delusions, in my hallucinations, in my interactions with people, my brain has changed and I have become a cowering mess that can't even answer a phone call. I don't understand it, and that makes it even worse. If I could just know how and why it is happening then I could deal with it. I have battled monsters and demons in my mind before and won. But this one sneaks up behind me and hits me before I can react. I never know when it will hit or how hard. There are some triggers I know of, but sometimes I will get through a trigger event just find and other times it is uncontrollable.

I am a stranger in my own mind. It does things I don't understand and can't control. And it is terrifying. If I could just find that moment when it changed, maybe I could change it back. Maybe I could get to know myself again. Maybe I could be in control. I don't want the monsters to win.

One of those days

Sometimes I just have one of those days.

I felt off before I even got out of bed. My legs hurt. My head hurts. Every noise seems too loud. Everything smells weird.

I just want to huddle up into a ball, but I feel claustrophobic at the same time. I feel ragged, raw, jagged about the edges.

I managed to make it to the kitchen to take my meds and grab some breakfast. My mom, of course, is on the opposite cycle from me and is manically mopping and cleaning while still in her pajamas. She has opened all the windows but didn't turn the AC off so it's cranking cold air full blast. She starts talking to me, too loud, too much laughing. I lean against the counter and put my head against the cabinets and just hold on, taking deep breaths. The kitchen is chaos of misplaced chairs and the cats are freaked out and circling. My head just spins and I want to huddle onto to the floor until it all goes away.

Slowly I get it done. Coffee and some food to bring my blood sugar up. Mom is still jabbering away, but at least the chairs are back on the floor and I have someplace to eat. Finally she asks if I'm OK. All I can answer is "no." I don't know why, I don't know how, but today I feel trapped and frantic. It just happens some days and I don't know why.

She is quiet for about 5 minutes, then starts jabbering again. Finally she leaves the room and I can eat. My mind finally starts to settle, like a dish of water that has been sloshed about and slowly the waves get smaller until the surface is still. OK, it's almost still. I still feel off.

I have no idea if this feeling will last all day or not. I have no idea why it happens. It just does sometimes. There has to be a rhyme or reason to it, but I have yet to figure it out. I will just suddenly feel trapped and frantic and anything out of place or too loud or too smelly or too anything will make it worse.

Hopefully today it will only last for a little bit, an hour or two. Otherwise it will be one of those days.

Who is the caretaker?

Clinging to the edge. That's the only way I can describe today.

The past few days have been an emotional rollercoaster, which is exactly what my psychiatrist told me to avoid. (How, he didn't say).

I have an old cat who will probably need to be put to sleep soon, so I'm having angst over that. Where does one draw the line over a beloved 15-year-old cat being in too much pain and being OK and still happy? My mom just wants it done because she's sick of cleaning up the messes. My dad is against it because he is worried about how I will react. So that leaves me with the deciding vote and watching my poor cat every moment wondering if she's OK or not.

In the middle of this, my mother has decided to go through one of her rebellious phases. She's like a fucking 14-year-old. She has COPD bad enough to be on 4 liters of Oxygen and she literally takes more than 20 prescription medications. She sees 7 different doctors, from her primary physician to a heart specialist to a kidney specialist. She also sees a hack pain specialist whose answer to everything is to give her more and more powerful pain meds instead of eating better or trying physical therapy.

She takes care of her own meds and doctor appointments - usually. But the past week she just "doesn't want to deal with it." She told me yesterday that "I'm 63 years old and I'm rebelling against the restrictions put on my life."

Seriously, mother? By 4 p.m. she was using her rescue inhaler because she hadn't done any breathing treatments all day. She refused to make 3 doctors appointments (wow, I wish I had the option to even see a doctor, let alone refuse to see one). By the time my dad got home from work she was shaking so back she kept dropping things.

I have no idea if she took her meds. I know she was up at 4 a.m. doing god knows what out in the kitchen. When I got up at 11 a.m. she was standing ASLEEP at the kitchen counter with a bowl of cereal. I had to poke her and prod her for 20 minutes to get the cereal eaten, then sent her to bed. I mopped up the mess from my sick cat, fed the other cats and cleaned up her breakfast mess.

And now I am a fingernail away from losing it. I depend on my parents being at least moderately stable. The last time my mom "rebelled" she ended up in the ICU and I just can't face that. I had to deal with it last time and I am panicking that it will happen again. And I won't be able to deal with it. I am afraid to go check on her to make sure she is actually in bed and not asleep on the damn toilet or something. All I can do is stare at the new scars on my arms and tell myself over and over that I can't go there again. But I need something stable to hold onto and it isn't there.

Yes, my mom is disabled. But she is by all accounts - when she does what she's supposed to - stable enough to take care of me. I am not - by all accounts - stable enough to take care of her. So what do I do when my caretaker decides to not only take the day off but turn into someone I need to take care of?

Yeah, that isn't in my therapy handbook.

Stripped bare

"Bridging The Gap" acrylic on wood by Kathryn van Roosendaal.
Trying to find stable ground beneath my feet.

Nothing strips you of an masks and illusions like having a total mental breakdown. There are no lies, no privacy, no humble covering left to your damaged psyche.

I had a breakdown. I let the stress build too much and was depending too much on the meds to keep me stable. It didn't work. The worms that thread their way through my brain and eat my memories and thoughts spread down my arms and I ended up on the floor of my bedroom with a pair of scissors chopping my hair off and gouging my arms in an attempt to get them out. This was how my dad found me. They were on the phone with my psychiatrist within minutes and I was in the ER withing 10 minutes.

What followed was a period of total sensory deprivation. I was in Behavioral Med (the new PC term for the mental health ward) for 5 days. The meds blocked all my voices and delusions, which for me wasn't a good thing. I imagine it's good for people new to schizophrenia, but they are so much a part of my life I felt cut off and numb. I couldn't sleep. I was jittery. And I was surrounded by other unstable people, which was putting me even more off balance.

The worst was the lack of privacy. I can understand it, but I hated it. No closed doors; even the restroom had only a partial door. If I was alone in my room they checked on me every 15 minutes. There were interviews and check-ins with the psychiatrist, three different therapists and each charge nurse each and every day.

Many of the other patients had been there multiple times. They felt safe there. I was frantic. My anxiety of doctors and hospitals was in full gear and my vitals were constantly off. At one point my heart rate was around 120. And the food was so different from what I am used to. It is heavy on protein, with makes me sick when I eat too much of it. I couldn't get it through their heads that I couldn't eat dairy so there was always milk or pudding on my tray.

Going home felt like coming out of a sensory deprivation tank. It didn't get better for a while, though. They had changed my meds and I didn't react well to them. I couldn't sleep. I stayed jittery and agitated and couldn't calm down. They gave me sleeping pills but they just made things worse. I was two weeks on the "bad meds" before my regular psychiatrist put me back on my old meds. I am still trying to detox from the hospital meds and I still feel like the ground beneath my feet could collapse at any moment.

I can tell there will be some serious recovery time from this. My regular doctor equated it to being in a car accident and I just need to be gentle with myself and let myself heal and find my balance again. In the meantime he has it set up so that I see him or my therapist every week to make sure I am doing OK.

At the same time, I keep getting calls about bills and debt - this is no doubt what set me off in the first place. My dad has taken over opening my mail and paying my bills, so here I am 42 years old and basically not able to take care of myself. At the same time I'm still getting letters from SS disability needing proof of disability. So I can't take care of myself. I can't even open my mail or answer a phone call without have a total meltdown. I can't leave the house without tranquilizing myself with Xanax and I've had to cancel several events because I'm too freaked out over talking to people and being out in public. But according to the government I should be perfectly able to hold a job. Oh, and the IRS has now put a lien on my earnings for past taxes due. Good luck with that. I would have payed that two years ago if they had granted me unemployment or disability. As it is, they have nothing to put a lien on. Talk about the left hand not knowing what the right hand is doing.

And I sit there feeling like my mind has been sunburned and trying not to panic over ... everything ... and hoping I can stay on top of the cliff and not fall back into the abyss.

Rebecca is back

So, Rebecca is back. I'm not sure if that's a good thing or a bad thing.

Rebecca is/was one of my most coherent and longstanding hallucination. She has been gone for years, but last night she came back.

Rebecca is both real and not. She was my daughter-to-be who never had a chance of being born alive. In mid-1995 I had my first miscarriage. It happened early enough that I didn't even know I was pregnant yet. I was having serious problems with poly-cystic ovary syndrome and my periods where so haywire I had no idea I was pregnant until I started bleeding heavily and having cramps. My then-fiance did the "there, there" thing but I wasn't really upset. Just surprised. About 6 months later, despite the hormone pills, it happened again. Again I had no idea I was pregnant until the miscarriage so there was no attachment.

In early 1996 I got pregnant again. This time I knew it, even though I was still on the pill. Apparently my anti-depressant interfered with the hormone pills (thanks, Doc) and I was able to conceive. But things did NOT go well. I had severe abdominal pain, far beyond any cramps I had ever had. By the time I was 3 months along, I could barely function because of the pain. The doctor kept telling me that "some discomfort" was to be expected, but this was ridiculous. They did an ultrasound and it came back "uncertain" so they did an exploratory laparoscopy. They discovered that my uterus was deformed and divided in two parts. The fetus was in the part that was highly scarred, likely from the PCS and endometriosis. The fetus was trying to grow, but my uterus wasn't stretching.

There was no way my baby would stay put long enough to be born alive. Either she (by this time I had arbitrarily started calling her a girl) would spontaneously abort or my uterus would burst. My doctor recommended an abortion for my safety. My fiance and I agreed and it was done.

Shortly after that my little girl showed up as a hallucination. I would hear a baby crying or would feel a small body snuggled up to me in bed. I knew logically it was my grief expressing itself, but Rebecca became very, very real. I clung to her as much as she did to me, because by then my doctors had agreed that I was unlikely to ever have any children of my own.

She came and went a bit over the years depending on medications, stress, etc. Eventually she grew to be a toddler instead of a baby and she would talk to me and I would talk to her. Then my youngest sister moved in with me with her two small children - Kent, age 18 months, and Kassie, age 6 months - and Rebecca faded away. I had real babies to cuddle and care for.

When Kristin and the kids moved out 4 years later I expected Rebecca to come back, especially since I was having hallucinations left and right. But she remained gone. Even when things got severe and I was suicidal and on the verge of being hospitalized, she was absent.

Now, just as I'm starting to pull things together, she is back. This latest medication has been doing a pretty good job of keeping all of it under control, but she slipped through. I'm not really surprised, though. My sister-in-law Korrin is 6 weeks from giving birth to her 5th child. This will be niece/nephew number 13 for me. Each time one of them is born I always start with the "what ifs". And so Rebecca has come home again.

She has aged just a bit. She seems to be about 7 or so, although in reality she would be 17 or 18 by now. Last night she sat cross-legged at the end of my bed while I was trying to fall asleep and told me about her day. She really likes my cats and she wants to color Grandma and Grandpa a picture. She sounds a lot like my niece, Kassie, which makes sense because that is the best template my subconscious has for a young girl.

Right now she's telling me not to be sad. I wish I could, baby girl. I wish I could.

Just tired

I'm just so tired of it all. Completely, totally exhausted. No, I haven't reached the suicidal point. At least not yet. I just need a vacation from being me.

I am tired of being tired. Between the grogginess from the anti-psychotic and anti-anxiety meds and the fibromyalgia, I am always tired. Some days are worse that others, but I am just so tired of it being a chore to do anything at all. Some days just getting to the bathroom is exhausting, let alone taking a shower, getting dressed and getting something to eat. But I can't just stay in bed because that makes me ache even worse. And if I don't try to occupy my brain, things get really messy.

I am tired of battling myself. I have meds I need to take, but I have a major paranoia that each and every pill is poisoning me. Some days it's so bad I have trouble even eating because I can "see" the poison in and on the food. So each and every time I pop any kind of pill, whether it's a prescription med or a vitamin, I have to fight with myself over it and it always makes me panic just a little bit. Yes, I am aware of the irony of having anxiety over taking my anxiety meds. And I have days where I barely eat because I just can't do it. I can't put that stuff in my body.

I am tired of fighting to act as normal as possible. I am so tired of forcing myself to analyse everything I see, everything I hear, everything I smell, everything I touch to determine if it is real or not. Every single conversation is a field of landmines and I have to tiptoe through the what is said and what isn't said and it gives me headaches trying to figure out how to respond. I can act, put on a mask and play a part. But I don't want to. I want to be me. But no one seems to get it when I try to have a conversation without the filters. And I get frustrated because they don't get why that was funny or something else isn't how it should be.

I am tired of trying to prove that I am worth something. I have a very low self-esteem and always have. I have made myself easy to ignore, and life hasn't helped with that. Society tells me I am worthless. My government tells me I am a pathetic leech who is just lazy and doesn't want to work. There is always someone or something that is more important than me. And I tell myself it's OK that my doctor cancels or leaves me waiting for 3 hours because that other patient is always more important than me. It's OK that I am always eating out alone - if I go out at all - because my friends and family all have more important things than me. I can make excuses all day about how anything and everything is more important than me. But at the same time, I have what therapists in my past have called delusions that tell me I am strong, powerful and more than human. I may be here on earth right now, but when I'm not I am the thing that humans call on to chase the monsters away. So even as I tell myself I am invisible and not worth anyone's time, I am struggling not to get up in their face and tell them HOW DARE YOU IGNORE ME! Thanks to past hack therapists, so-called friends who took advantage and one abusive ex-fiance, that inner strength is so smothered I am basically a throw rug that everyone walks on. I am trying to find a voice and let people know I'm here and worth listening to, but my voice has become a whisper and no one can hear me.

I am tired of fighting. It would be so much easier to just give in to the delusions, the hallucinations, the pain, the exhaustion. It would be so much easier to just let them lock me up in a psych ward somewhere and let someone else deal with everything. It would be so easy to just give up. God, I'm so tired I just don't want to deal with any of it any more.

Is anyone listening?

One of the hardest things I've ever done is come out as schizophrenic. It was even more terrifying than coming out as gay. It really says something that I was willing and able to come out as gay to my very Mormon family before I was able to tell them I am seriously mentally ill. I even hid the schizophrenia from my doctors when I moved there to Utah. My experiences in California were so devastating that when I moved I just told my new doctors I had clinical depression and left it at that. That is what my mom has, so it was familiar and "safe."

Of course, that means for years I did not get the treatment I really needed. But I was trying to get treatment for "mysterious" physical ailments: overwhelming pain all over my body, unexplained hives and skin swelling, weakness, constant headaches, etc. And I learned the hard way by dealing with the California doctors that as soon as they see "schizophrenia" written in your records, they suddenly stop listening to anything you say. It is an automatic "it's all in your head."

I was finally able to get a diagnoses of fibromyalgia, although no treatment was ever forthcoming. I react strange to any and all medications and I have a paranoia about taking meds. And because I have become so adept at hiding any and all symptoms - physical and mental - my doctors never really pushed for treatment. If I wasn't complaining, I must be OK.

Fast forward 12 years. I am not OK. The fibro and other autoimmune problems are bad. Really bad. But now I have no resources to get the help I need. I have state coverage that lets me see my regular doctor, but it doesn't cover any tests or specialists. So I am stuck, unable to see a neurologist or reumatologist like I should be. I am only able to see a psychiatrist because he volunteers at the low-income clinic for people without insurance. My application for disability is now nearing 2 years.

There are groups that say they are there to help people like me. NAMI and NIMH have programs to help the mentally ill - if I live in Salt Lake City. Correction, they have programs in southern Utah, but they are mostly for those with drug addictions or who are recovering from abuse. They have nothing that deals with people who have a serious mental illness. They have teen support groups and senior support groups, but nothing for a 41-year-old. They have an education program for families of people with bipolar disorder or depression, but nothing for schizophrenia.

I have tried contacting these groups and others. I have offered to share my story as part of my therapy. I have written essays and articles describing what it is like to be schizophrenic. NAMI, NIMH, It's OK To Talk, Trevor Project, and other groups reply that it's wonderful that I am sharing, but no one will publish. I don't fall into the right categories. I'm too old or too young. I haven't gone to one of their groups or given them money, I haven't actually been hospitalized for a suicide attempt (even though I have attempted), I don't have the right mental illness ... basically I fall through the cracks and no one wants to listen to me.

I need to talk. I need to share or else it gets bottled up and I get even more sick than I am already. But what do you do when no one listens? What do I do when the groups and organizations that were invented to help people like me tell me I'm not worth listening to? Well, you start an obscure blog that no one will ever read, but at least it gets the pain out in words in stead of blood.

Stay out of my space

One of the ways I have always dealt with the confusion created by my head is to control as much of my surroundings as possible. I am not OCD by any stretch of the imagination, but I have my space that is MINE and don't mess with it. The problem is my mother doesn't get this. She never has. She has absolutely no respect for personal space whatsoever to the extent that it even bothers my non-mentally-ill siblings. Hell, on one trip to my sister's house, my mother spent an afternoon rearranging her kitchen and still doesn't get why Kristin was so irate about it.

I have tried to talk to her about giving me me space, but it just doesn't sink in. We will be in the kitchen and she will stand about 2 feet behind me and just watch what I am doing. It freaks me the fuck out. She will come into my room while I'm working on something or just trying to relax. My room is supposed to be my safe zone where I go when I really need to not interact with anyone. My dad gets it. My siblings get it. Hell, even my nieces and nephews get it. If they are visiting and I go into my room and close the door, that means leave me alone. The door is never fully closed - I have a stop that keeps it about 4 inches open so the cats can get in and out - but it is still closed. Open door means OK to come talk. Closed door means go away.Me sitting with the door closed, headphones on and not responding to anything means go the fuck away.  It should be simple.

One gray area is the bathroom. "My" bathroom is the large public bathroom. This gives me some fits when we have company, but I can usually deal with it for the most part provided someone cleans up the toddler pee from around the toilet. We had one incident of my mom trying to rearrange my stuff in the drawers but I pretty much lost it so hopefully that won't be repeated.

Right now we have an issue, though, and it's flipping me out. One of the cats is sick with a UTI and has had to be isolated. It is my parents' cat, not mine, but I offered my bathroom because it is bigger than their tiny master bath. The last time something similar happened the cat was isolated for 2 days and I was able to deal. Yes, it freaked me out that there was cat litter all over the floor and the counter. I had bleach and a roll of paper towels and used them copiously. When the cat was released, I scrubbed the whole room and we were back to normal, which means no cats allowed (I usually keep the door closed to keep out the felines). Well, this time we are at 4 days and counting. The cat is doing fine at this point, but my mom is convinced she still needs to be confined. I haven't been able to shower because of the cat litter all over and today my mom went in to sweep and clean up a bit and started straightening my things. She sat in there for an hour just to pet the cat and I couldn't use my bathroom when I needed to. She opened the window, which doesn't sound like a big deal but I am ALWAYS cold and I walked into a bathroom that felt like an icebox. I am starting to have anxiety about going in to pee - which is just pathetic.

Basically, tomorrow the cat is out. I can't take it any more. I want a clean floor. I want to shower. I want to brush my teeth without it tasting (imagined or real) of cat litter. I love all the cats, but there are reasons the cat boxes are kept in the garage. And there are reasons my parents have a separate bathroom. There have been times when my mom has used mine because hers is occupied and she has left a mess. She has some incontinence issues and she has left the pad just sitting in the trash and the room stunk of urine and she splattered diarrhea inside the bowl. Yes, it was contained in the bowl, but it was THERE. Some days I can deal fine. Then there are the days when I can SEE the germs and such all over everything and my skin just crawls.

I need my space back. And I need it now.

Changes

One of the reasons I've had so many problems the past year or so is that the methods I had to deal with the schizophrenia just don't work any more. I used to go walking, meditate, listen to soothing music, etc. Now that just makes me more agitated. Instead of calming me down, it sets me off even more. I actually had a severe episode listening to my favorite Loreena McKennitt album. Not good.

So, new methods were needed. I had a pretty bad break where I was about THIS CLOSE to cutting. My head was screaming and I couldn't sit still. I ended up on the floor huddled on my knees just thinking about how opening a vein or two - not to kill myself but to see the soothing red flow out and hopefully take the screaming with it. I had some yoga meditation music going and it was doing absolutely nothing. The screaming in my head just got louder to drown it out.

All I could think was that I had to stop the noise in my head. If it was screaming, then I needed something louder. There were one or two Linkin Park songs I liked - some of their quieter ones - and I put them on and cranked the headphones. It actually worked. The loud, screaming metal drowned out my head and helped me calm down.

So now I have different methods of getting through an episode. I would still go walking if I could, but physically that's not an option. The calm, soothing music is totally out and the loud stuff is in. Now my weapon of choice is Linkin Park, Breaking Benjamins, Rob Zombie, Red, Cheville, Garbage, Staind ... music I used to absolutely hate is all I can listen to. And I love it. The lyrics speak to my disturbed brain and it's loud enough to drown out any voices or other feedback going on in my brain.

Who knew you could meditate to metal.

What good is God?

I was raised Christian - Mormon to be specific - but that went away pretty quickly as the schizophrenia started to really take hold in my late teens and early 20s. I became a pagan with mostly Wiccan leanings and that has served me much better. For one thing, it gives a place for the voices in my head. It gives reasons for my hallucinations and delusions. It made me feel less isolated and more in control.

In the past year or so even that faith has wavered. I am still struggling with the idea that there can be any benevolent creator or creators who would do such horrible things to his/her children. Of course, it doesn't help when people keep trying to placate me with inane sayings like this one:

When you are going through difficulty & wonder where God is, remember that the teacher is always quiet during the test. 

What kind of bullshit is that? This isn't a math quiz I'm going through, here. I'm physically sick and mentally ill and the reason there is no end in sight is because this is some kind of cosmic ACTs? It's like those stupid saying that tell you that God never gives you more than you can handle or the door never closes without another opening. Either those are a load of crap or God is actually a sadistic bastard who likes to sit up on high and see how long Sisyphus will keep pushing that boulder before giving up and flipping him the bird.

Of course, this has led to one of my major delusions: I did something extremely horrible in a past life and am paying off the Karma in this one. In my saner moments, all I can think is that God or the gods just don't have any power to help me at all. Either way, it's disheartening to think I could be going through all of this and have there not be a reason for it.  

Blurring

I have a major paranoia about medication of any kind. Part of it stems from watching my grandmother and now my mother medicate themselves to death. My mother is currently on 26 prescription medications. Yes, she is genuinely sick, but I can't help but wonder how many of those meds are to treat the side effects of other medications. She has periods of dementia - again, probably caused by the meds - and has landed in the ER 3 times for bad medication reactions.

Watching her and her huge hands-full of pills has made a major impact on me. Her first response to anything is to take another pill. He bones are brittle, her skin is thin and fragile, she has constant infections. And she thinks that just taking more pills will fix it. She sits there and tells me that she needs more meds for hypertension while eating half a jar of pickles.

Meanwhile, I am on 4 prescription medications and my doctors have had to fight tooth and nail to get me to take them. They are poisoning me. I know they are. They are horrible chemicals and I don't know what they are doing to me. But I have to have them. I need to take artificial thyroid hormones because my thyroid doesn't work right. I have naproxen that I take for pain, and just going without it for a day reminds me of why I need it. I also have a prescription for Lortab, but I only take it about once every 6 months. I have my anti-anxiety meds, and isn't it ironic that taking Xanax freaks me out. And I have whatever anti-psychotic medication we are trying at the time. Right now that is Seroquel. I have had some seriously bad reactions to anti-psychotic meds in the past and it took a lot of convincing to get me to try some of the new ones.

My psychiatrist finally convinced me that the schizophrenia is an actual biological problem and the meds are to help balance the brain chemicals. But each one acts differently and I react strange to just about everything. The Seroquel has been the best so far - and we've tried 5 so far just in the past year - and even it is giving me problems. At the low dose I was still able to function kind of but I was still hallucinating, although not as much. Now we've increased the dosage and I'm zoning out. And that's what I hate about the meds the most. I will be sitting there trying to put a thought through my head and realize I've been wearing the same clothes for 2 days. I can't sleep, but I can't really wake up either. And the dreams are vivid and creepy and I have to fight to wake up. And when I'm finally awake, I have trouble telling if I really am awake or if it's just more of the dream.

I know they are doing research on how schizophrenia works in the brain and what genetically causes it. I just hope that someday soon they come up with a medication that helps with the symptoms without turning me into a fucking zombie.

Clearing the air

I have a new therapist. That is nothing new. But this one feels like she might actually do me some good. She feels, looks and sounds like a cross between my older sister Tammy and my youngest sister Kristin. She listens. She takes notes. She has dealt with people with social and cognitive disorders before. She didn't sit and tell me that it will all get better, because she knows it won't. But she is willing to help me as I struggle to cope.

Schizophrenia is nothing new to me. I have dealt with it most of my 41 years of life. But I have always hid it, from my family, my friends, my doctors, my therapists, my coworkers, my bosses - everyone. Because it is terrifying. I have struggled alone to find ways to act like I'm just another normal person living a normal life while inside my head is an epic struggle to keep a grasp on reality.

One way of coping has been writing. I started as soon as I was able to put pen to paper. I started writing fiction, but when I hit my 20s I was getting too much feedback about my stories being disturbing or dark. They weren't normal enough for someone trying to hide their inner Jabberwocky. So I stopped writing fiction and started writing nonfiction. Writing scientific documents, news articles and magazine stories got me through the next 20 years, but then I broke. Writing wasn't calming any more because it meant talking to people, researching, spending hours and hours dealing with editing and sources and layout. It became a source of stress instead of a release.

It has been more than a year now since I've published anything. And so I am clearing the air. This is not fiction or nonfiction. It is my brain, and it falls somewhere in between. I am clearing the air, unclogging the pipes and getting the words flowing again. And at the same time I am telling someone - even if it is just a web server and no one human ever reads it - what it is like to be me.

Welcome to my Wonderland. It is a terrifying place that is sometimes so beautiful it makes me weep. It is the most exquisite rose with deadly thorns. It is an empty, lonely place that is full of voices and friends that may or may not be real.

Welcome to me.