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.