Happy Holidays - or not

I haven't been posting here or on my Facebook page. I am just so anxious and frankly pissed off that I have been afraid to voice my real feelings. Yes, I am still fighting that ingrained feeling that you don't complain or tell someone you are angry and why. I am trained to always keep the peace, be the calming one. Well, that hasn't been the case and so I have just kept silent.

To start with, the Russian roulette of immunosuppresent continues. I started yet another one - this is number 5 - at the beginning of this month. So far - knock on wood - it is doing what it is supposed to do. But then, so did 3 others at the 4-week point. So I am on edge just waiting for it to do something horrible.

Then there are the holidays. I planned ahead and had everything either in my hands or sent to the person by the first of December. The plan was that then I could just relax and not stress gifts. Well, I didn't take into account my mother and her holiday mania. She flip-flopped all over the place on what she would get the grandkids. Then, when she had that settled, she didn't let it go. She had to do more. It wasn't quite right. They needed to do something else. She hit that manic stage that I was trying so hard to avoid.

Then she started the baking. The original plan was one day of making one kind of cookie and being done in one day. Well, she ended up with 5 days of baking instead. The house smelled heavenly and I couldn't eat one single bit of it. She was on her feet so much, she had to get her walker out again because her knees hurt so much. But she wouldn't stop. I started to get manic and OCD myself, but I couldn't do anything about it. The kitchen would be a mess, there would be flour all over the counter where I was trying to make dinner, and the faucet handle and cupboard knobs were sticky. I NEEDED to clean the kitchen, but I couldn't. And still there were all the wonderful things I couldn't eat that were being packaged and sent to everyone else.

Now, normally I don't stress too much over people eating things I can't. My diet is so restricted, I just can't realistically expect everyone else to bow to it. But things were getting too fucking out of control. Even Christmas dinner was devastating. My parents had their traditional ham, which is fine if I don't need to eat it or touch it. I had a broiled portabello, which was delicious. But as I was fixing my own separate dinner, I told them I was almost done. They both looked at me surprised. My mom actually asked if I was going to eat with them. My answer was "of course", but the fact that they were sitting down to Christmas dinner and weren't expecting me to join them was heartbreaking.

Yesterday my sister Kristin came down with her kids and her live-in Ryan. There was pizza and birthday cake for my niece Kassie. No one asked if they could pick us some of my gluten-free donuts or coconut milk ice cream so I could join in. And right now the house still smells of baking thanks to the omelet pancakes my mom made everyone else for breakfast. There are platters and plates of peanut brittle and fudge and other goodies all over the kitchen counter - none of it I can eat. At this point I seriously am just pissed off. It reaches a point where it feels to me like no one thinks I'm worth any effort. There are 2 cookbooks in the cupboard full of recipes that are gluten-free and vegan. With all of the baking going on, would it hurt my mom to at least open one up and see what is there?

I have been bombarded with a billion little words and actions that make me feel isolated. My no-stress holiday season is instead a minefield of hurts, imagined or otherwise. I am not sure whether to break something or just curl up and sob. I feel like I'm being a whiny child, but I really just want to be included without feeling like a burden. And that just doesn't happen.

The Once And Future Vegan

I have been vegan off and on for about 25 years. Originally it was for ethical reasons. Then my body started to reject complex proteins and I started getting sick after eating meat. Dairy disappeared from my diet after the first go-around because I lost my tolerance for lactose. Then I started having trouble with beef, then pork, then turkey, and so on. I found out I was also gluten intolerant and probably had been for years. My allergist thinks that it may been damage caused to my GI tract by the gluten intolerance that caused the progressive intolerance to other proteins. My system couldn't digest the proteins and it allowed those huge molecules to break through the intestine wall and cause an autoimmune response.

For years I was stuck with a vegan, gluten-free, nut-free diet. It was healthy, that's for sure. I cooked 99% of my own meals because I could never trust that a restaurant wouldn't have something not listed in the ingredients. I did find a few canned soups and frozen dinners that I could eat, but they get old really quick when there are only 5 of them for you to cycle through. Even high-protein plant sources like quinoa and legumes left me feeling yucky if I ate too much at once.

Earlier this year, I started seeing a new allergist and he got me on some medication that targets the immune system directly. I started feeling better after binge eating hummus or other heavy plant proteins so I tried eating some fish. I actually didn't feel sick after eating it, although it tasted weird after not having any for so long. I found that my taste for cooked fish was almost non-existent, but I loved the sushi with salmon and tuna. Eventually I got up the courage to try the one thing that had been my Achilles heel in the past: Buffalo wings. I found a good place that does them right and they tasted divine. And I didn't get sick. My body dealt with it fine. I started eating wings a couple times a month - it was my guilty pleasure - and I was fine until I tried a new barbecue sauce that had wheat in it. Yeah, that gluten is still a problem. I was sick for about a week.

I eventually tried eating chicken in general, and even some turkey, and it sat fine. I even tried eggs and they didn't make me sick at all. Progress! I was able to go out to eat with my parents and eat "real" food. I started cooking some, although it had to be pre-cooked or handled frozen. I couldn't even look at the raw stuff without getting woozy. That should have been my cue that not all was OK

Well, eating any meat came to a screeching halt this past week. My parents are going out of town to my sister's place for Thanksgiving and I am staying home (yeah, I still can't not panic over traveling). I thought maybe I could find a pre-cooked turkey breast or something similar that I could have at home. I made the horrible decision to go browsing through the meat department. Now, keep in mind that not 3 years ago I couldn't walk past it without "seeing" blood running out of the bottom of the meat cases. It is a section of the store I walk past quickly with eyes averted.

Yeah, it was a disaster. It started with the hams and pork loins. Then there were beef briskets and steaks. There were big ham bones and half chickens laying there raw, some so fresh they still had some feathers in the skin around the neck. Well, I wasn't seeing a ham, I was seeing a pig. I was seeing a cow, I was seeing one of those cute chickens my friends keep. I might have made it out of there just feeling nauseated, but then the pigs started screaming. It was that horrible sound you hear at a farm when someone is forcing the pig to go or do something it doesn't want to and it is terrified. The cows were panting, like they do when they are put in a chute and they can't get loose. The smell of the place went from the already awful smell of raw meat to the coppery scent of a lot of blood.

I had hysterics. I panicked right there in grocery store. I got me and the cart partway down one of the frozen aisles so at least I couldn't see the meat department any more, but that was as far as I got. I couldn't breath without smelling blood and I could still hear the screaming. I know I ended up on my knees holding onto the cart for dear life and I just tried not to sob.

The good news is that I have been going to that grocery store for about 17 years and they know me. They have helped me in the past when I have had sensory overload and had to just leave my cart and go. One of the ladies in the bakery could see down the aisle and saw that there was a problem and she called one of the managers. Her name is Louise and I think she's been there as long as I have been going there. She helped me stand up and had one of the other staff members put my cart in the back freezer so my groceries wouldn't melt. She helped me to the front of the store to one of the benches and just sat with me until I got calmed down. The pharmacy staff could see me on the bench and they know me really well. One of the techs came over to see if I needed anything. I told her I had some emergency anxiety meds in my purse but that my hands were shaking too much to get it out. She got me some water and helped my with my meds, then went back behind the counter. (When I went in a few days later to pick up some prescriptions, they all had to make sure I was OK.) I had already gotten everything I really needed, so when I was calm enough to walk and think, Louise had someone go get my cart so I could check out. She insisted that I have one of the baggers go out and help me get my groceries in the car.

I am still shaking from it. I had some chicken breasts I had cooked the night before so I would have some on hand for meals. I couldn't even look at them. I told my parents to eat them. Last night I tried eating some chicken sausage with my pasta, thinking that if it didn't look like chicken I would be OK. I ate it fine, but when I was trying to sleep I had a sudden panic attack about how horrible a person I was that I had eaten that chicken.

So ... I guess we're back to being vegan. I might be able to handle fish. Maybe. I don't think I'm going to push it right now. And Thanksgiving dinner will be a grilled Portabello mushroom. No turkeys need apply.

No More Promises

Yeah. Remember when I said I would be doing a bunch of posts for Suicide Awareness Month? That totally didn't happen. I triggered myself. Brain fried. Writing didn't happen.

Well, now it is October and there was still a bunch of stuff I was going to write about. But I'm not making promises any more. They just stress me out. I lived so much of my life writing under a deadline that I think I have at least some degree of PTSD when I sit down and know I HAVE to have this thing written by a certain date. I just can't do it. At least not yet.

So, this won't  be anything deep or insightful, but a general update.

I am doing OK. I think. It is really hard to tell, to be honest. I have in general had more energy since the CellCept really kicked in. But I don't know what to do with it. I have had days when I really run with it and I end up really overdoing it. And it has messed up any sort of schedule or routine that I had, which stresses me out. I mean, if I usually don't get up until 11:30 or 12:00, what do I do with myself if I wake up at 9:00? I have more energy, but not that much. It's not like I can spend the extra time cleaning the garage or pulling weeds.

And although I have more energy, I seem to be more brain dead. I find myself messing up simple tasks like making coffee and I am getting a LOT of exercise wandering around the house trying to remember what I was doing. I just honestly don't know what to do with myself.

And to make matters worse, I have had a LOT of alone time. My mom had ankle replacement surgery and has been in a rehab center for the past 4 weeks. I don't do well with a lot of alone time; my brain likes to run away with itself. I don't know how many panic attacks I'm narrowly avoided. And my poor dad comes home from work and I start talking non-stop because I have been alone all day.

And now I am panicking because my mom comes home tomorrow and now I won't be alone and I don't know how mobile she'll be and she has been alone a lot, too, and will want to talk and talk and talk and I don't know if I can do that with my brain being mush.

I need my routine back. It makes me feel safe. But I also like feeling better. I feel more productive and like I'm getting better. But I don't trust it - experience has taught me that I always end up crashing again. I keep trying to establish a new routine, but my energy levels are varying too much from day to day. For instance, yesterday and today have been awful because a cold front went through and my arthritis is flaring up bad. I also had doctors' appointments both days so my stress is up. Everything just keeps fluctuating all over and it's freaking me out.

So ... status report. Doing better. I think. Too much time alone. Freaking out over not having enough time alone. Routine screwed to hell. My hands hurt. I'm tired. I want to clean my room all in one day. THE ROLLER COASTER IS GOING ALL OVER THE DAMN PLACE.

Yeah, that's about it.

Why I cannot be a Christian

I have dealt with depression and suicidal ideation for as long as I can remember. And although I wasn't diagnosed until I was 19, looking back at my younger years I definitely had traces of the schizophrenia as well. I was fortunate that my mother recognized depression and got me treatment at the age of 11. That helped for a long time, but the darkness never fully went away.

When I was young, being a Christian is what kept me alive. If I thought about killing myself, I would also think that suicide was a sin and that I was put here on Earth for a reason. I was still young enough that those thoughts were enough to keep me going. I also didn't have the physical disabilities I have now. Still, there were a lot of times when my connection with God kept me here.

Then, as I got older, I started to question. I started in High School when I was taking seminary classes for The Church of Jesus Christ of Latter-Day Saints (if you go to high school in Utah, it's pretty much a given; seminary is part of the regular class schedules). It was during seminary that my logical mind got me into trouble and shook my faith. I was told that I just needed to have faith that God knew what he was doing when I would go to my seminary teacher with conflicting scriptures. I was told to have faith the God was still blessing us when the young man blessing our sacrament was a boy I knew for a fact had gotten at least 3 girls at school pregnant. I was always told to just have faith and everything would be fine.

When I moved to Los Angeles at age 19 I had the first of what I was sure was a psychotic episode. I was hospitalized and medicated. And the member of the LDS clergy they dug up was horrible. I actually had more in common with the Catholic priest that the LDS one, which was a sad state of affairs. I had given up a while before that on "just have faith" and that was my first suicide attempt.

Fortunately, several of my new friends were Wiccan, and they taught me a new way to look at the Earth, the Universe, and Divinity. With their help, I was able to integrate my schizophrenia into the religion and help me deal with it using meditation. I did well for several years, then the friend I had followed to LA abandoned me and went back to being LDS, saying that all that had happened over past several years was a hoax and she had been lying about everything. I had to find God again or I was going to hell. Cue my second suicide attempt.

I fell in with another group of pagans, who unfortunately weren't very stable or peaceful. I also became engaged to a man I thought really loved me, even though he cheated on me - I even caught him in the act a couple of times. I convinced myself that I had to become a warrior for the Goddess in the very real sense and joined the Army. By the way, if you are even half intelligent, it is really easy to fake those psych exams. This coincided with the beginnings of my autoimmune disorders attacking my joints and muscles and I washed out of  boot camp with busted knees and ankles. I returned to a cheating fiance who was still there for me anyway and a feeling of being a complete and utter failure at my purpose in life. You guessed it: suicide attempt number 3.

I guess it's a good thing I really suck at killing myself. I found new friends - some of whom were Wiccan, started college, and threw myself into scientific study. My physical pain was bad, but bearable. I was afraid to tell doctors that I was schizophrenic so I told them I had depression and the anti-depressants kept me functional. Long story short, after 6 years my "fiance" finally left with another girl, I couldn't handle the stress of college and working 3 jobs, and I ended up moving back to Utah. And the LDS Church came back into my life.

I won't go into the next 16 years of ups and downs. I never attempted suicide again, but I came close. I have been hospitalized, I have crashed and burned, I am now on disability, I have come out of the schizophrenia closet, and I live with my very LDS mother. She struggles with depression and physical disabilities and I don't know how she does it. You see, to be LDS, or a Christian in general, is to believe that everything you are is dictated by God. The Book of Job is often quoted "be patient in adversity" and all that rot. Well, I can't do that. I can't believe that. There is no way I can be patient with the utter shit I have to deal with.

If I were to believe like a Christian does that God has seen fit to give me schizophrenia, depression, anxiety, bipolar disorder, OCD, chronic nerve pain, severe body-wide arthritis, chronic hives, the list goes on - well, there would be absolutely nothing for me to live for. You see, if I believed that, I would have to believe that he hates me and is punishing me for something I have done or that I am supposed to be some sort of Job whom he tortures just to see if I'll break. I can't believe either of those.

It is still hard, but I believe the Goddess has my back. You see, in my beliefs, the divine doesn't act to give people cancer or send a hurricane to destroy a city. Instead, they work within the constraints of nature and science (as much of it that we know). Basically, I am tortured by some really fucked up genetics, but I have the Goddess and other spiritual beings there to help me, guide me, and give me strength. They do not cause my pain, but are part of what relieves it.

My mom has tried to tell me that this is what God really does, but then she reads the Bible and listens to the Church authorities and they preach the all-knowing God who controls everything. And my soul just won't let me pray to a God who would let millions die in earthquakes and hurricanes and floods - guilty and innocent - when he could stop it. I cannot follow a God who gives a small child a horrible disease and lets a murderer live until he is 90. This is not a loving God in my eyes, but a capricious one. I might as well pray to Zeus.

I will take my Goddess and my God and all my other spiritual guides that choose to tread lightly and let the Earth be herself. They are there for me. The Christian God isn't.

Suicide Awareness

I was going to do this particular entry as a video, but I kept breaking out in tears as I was filming. So ... text it is.

September is Suicide Awareness Month, so I am going to hopefully post quite a few things on the subject. Already I have seen a lot of good articles, blogs, and memes on the subject, but there is one vital topic none of them cover.

ONCE A PERSON HAS ATTEMPTED SUICIDE OR EVEN FULLY PLANNED IT, THAT THOUGHT NEVER GOES AWAY.

Suicidal thoughts are like addictions. You go through a crisis; you fight with it; you get help; you recover. But just like an addiction, that itch never fully goes away. The next time you feel that depression or sense of loss, your brain easily goes down that same path. It can be months, even years, but it is still there. Just like a recovering alcoholic with his 10-year-sober chip can fall into the bottle again if his life takes a turn for the worst, someone who has previously attempted or considered suicide can fall into that mindset again easily and faster than someone who has never been suicidal.

Why am I telling you this? Because if you have a friend or family member who has been suicidal in the past, you need to pay special attention to them if something bad or traumatic happens in their life. The warning period can be drastically shortened. PLEASE do not EVER discount a comment that they are suicidal or don't want to live any more. You shouldn't with anyone, but you need to be extra careful in these instances, no matter how many years have passed. You see, the brain is programmed to take certain actions when you feel a certain way. And if they feel that depression, anxiety, worthlessness, trauma, etc. again, the brain will go down that same road. Also, if they have attempted suicide in the past, the plan is already there. It has already been considered and thought out. It is as simple to the brain as the alcoholic who falls off the wagon - he knows exactly where to go and what drink to order to deal with how he is feeling.

And if you yourself have been suicidal in the past, don't assume those thoughts are dead and gone, and for the same reason. There are things you can do yourself to help slow down the fall down into the abyss. I have had some wonderful therapists and they helped me set up what I call road blocks in my thought processes. Basically I have trained my brain to identify when the depression or schizophrenia or my physical illnesses get severe and I start getting close to suicidal thoughts. I then have thoughts or actions that I take to derail the process.

The more mental road blocks you can set up, the better. You can use scriptures that help you feel better or you can meditate on a saying from the Dalai Lama. Basically, find a thought or feeling that distracts you from how horribly miserable you feel right now. I have photos of my nieces and nephews scattered all over my bedroom along with notes and cards from family and friends. I will make myself pick one or two of the photos and make my mind only focus on how much I love those kids. I also have friends and family I can text or message at just about any hour to help me out of a funk. And, as a final lifeline, I have programmed myself that I will contact the Suicide Helpline before I do anything to myself. I have the link to their chat option on the bookmarks bar on my computer.

I cannot stress enough how important it is to understand this. Not two weeks ago I reached that final step. I have a ton of roadblocks set up to derail suicidal ideation when it is a mental health issue. But this time it was a major bad reaction to a medication for one of my autoimmune disorders. I was physically so miserable - I couldn't eat solid food for days and I had hives the size of my hand on my thighs and arms - that it bypassed all the roadblocks. The pain and weakness jumpstarted the suicidal thoughts so fast I was on the edge before I or anyone else realized. Thankfully that last roadblock - to contact the Suicide Helpline - was still there. It was a Sunday night and I was on the chat for about an hour. The wonderful person on the other end got me to promise to talk to my allergist before doing anything. They were smart about it and had me chanting it over and over before they would let me offline. And my wonderful doctor got me in to see him within an hour of my calling the next morning. He took emergency measures to get my physical symptoms under control and he wouldn't let me leave his office until I had promised I wouldn't hurt myself.

I am still reeling from how fast I went down that road. I have had years to retrain my brain and I still got far too close to killing myself. It can happen to anyone, even those who think it is a thing from their distant past.

Please - pay attention. Never ignore any sort of talk of self harm, not wanting to live any more, or wishing it would all end. Don't ignore it in yourself. And don't ignore it in others. Lives CAN be saved if we all just agree to help each other.

A Safe Place To Go

I mentioned in my last entry that I have a Safe Place in my head where I can go and be calm and alone. Well, my psychiatrist has me working on building Safe Places in the real world. It is part of the process of overcoming my paranoia of going outside the house and dealing with the social anxiety. I have successfully developed several Safe Places outside the house where I can go and feel calm and relaxed - the cafe at my grocery store, a favorite restaurant, etc. I have even miraculously made my psychiatrist's office into a Safe Place, the only medical/doctor location I have been able to do that with.

Well, today I went in for a Dexa scan, which measures bone density or something like that. My primary physician ordered it because I haven't been taking any kind of hormone replacement after getting my hysterectomy. It was a medical place, and a new one at that, so my anxiety was already up. The whole thing was quick and painless - I think I was in the office a total of 20 minutes - but it totally freaked me out. The scanner was an arch that moved up and down my body in lurches and stops. It would move toward my face, jerking closer and closer, then go the other way, then back again. I don't know why it triggered hysteria, but it did. I got out of the care and I was shaking so bad I had trouble getting the keys in the ignition.

I didn't want to go home. I would just sit and shake and the hysteria would probably get worse. So I sat and went through my head to find a Safe Place. The first to pop into my head was a restaurant I really like, but I wasn't hungry. Next to pop in was Affogato, a beverage food truck owned and operated by my dear friend Elise. When it isn't driving around to fairs, concerts, and farmer's markets, the truck has a parking spot at a bicycle shop not far from my house. It has an awning and chairs and, best of all, fair trade and absolutely yummy coffee, tea, smoothies, and other delightful things.

I made it over there and had to sit in my car for a few minutes before I could even get out. I was still shaking like crazy and trying to not break out sobbing. I got over to the order window and Elise was there with a huge smile and a "It's wonderful to see you." She mixed me up an iced Chai made with coconut milk and I sat in one of chairs in the shade and I could feel the hysteria start to drain away. Elise and her friend and cohort Chris and I chatted for a while and I sipped that luscious Chai and just let myself listen to the traffic and the wind chimes and just be for a while. I probably sat there for about an hour, and it was wonderful. I finally said my goodbyes and made my way home.

My mom, of course, wanted to know how it went. A bit of the hysteria tried to surface while I talked about it, but I remembered the cooling breeze and the taste of the Chai and I stayed calm.

I realize now just how vital it is to have those Safe Places to go to when I feel like I'm on the verge of breaking down. Home usually does it, but not always. And sometimes I am too far from home to make it there in time. It is a work in progress, but I see now just how important it is to push my comfort zone just enough to stretch its boundaries.

Stopping To Listen

I am going to admit something to you, something I've never admitted to anyone before. I truly believe that some of the voices I hear are real. Some of them aren't, and I can tell the difference because they "sound" different. I also believe that the "delusional" other world that I visit in my mind is real. I know a lot of my paranoia and anxiety are caused by the unreal stuff, the "voices" that tell me bad things will happen or that I am worthless and better off dead. But there are also voices - they are truly friends - who help me. They tell me I am beautiful, that I can take a few deep breaths and make it through the next 10 minutes and things will be fine. They are my own personal cheerleading squad.

I have never admitted this to any psychiatrist, psychologist, therapist, or any other medical professional. I have always been afraid of what they would do or diagnose. I don't trust them to believe that there are worlds beyond ours and that maybe - just maybe - those like me are in fact peering between the veils and catching a glimpse of the wonderful, the terrifying, and the awesome.

I am not a religious person - religions tend to label schizophrenics as deluded, possessed, or just sick. But I am very spiritual. If I let my mind go still, I can feel the life blood pumping up the trunk of a tree or feel the fires that forged the lava rock under my feet. Every animal has a pure soul inside of it and every plant breathes for our Mother Earth. It I had to give a name to my beliefs I would have to say I was Wiccan. The "Harm None" rule is one I follow diligently and the Celtic names of the deities and spirits resonate with me better than other cultures. And while I have left the more structured parts of the Wiccan road behind me, at one time they gave me the support I needed and gave me names like empath and seer to let me see my schizophrenia in a softer light. It taught me to meditate, to listen to the Earth, and understand that I am a vital part of something much larger than me. It saved me in one of the darkest times of my life.

And it continues to do so. In the beginning of my Wiccan path, I walked ceremony to find my patron deity. The one who came to me was The Morrigan. She is a warrior goddess, the Great Queen, and a great healer. She reaps the battlefields for the souls that are ready to pass on to the next life and her Ravens clean the field of all the ugliness so that new life can move in. I was terrified of her at first and wondered why she would choose me. I thought it meant that I needed to become a warrior - a belief that led to a misguided and short-lived effort to join the US Army.

Over time I learned that there are many ways to be one of her warriors. I learned to use my words as weapons and as a means to heal. I gave every bit of myself to helping others, fighting against poverty, abuse, and misinformation. It gave me a true purpose, but it was exhausting and eventually I couldn't do it any more.

And so I find myself now cut off from all the ways I fought. I believed that The Morrigan had abandoned me. Instead, I had stopped listening. I feel weak and useless, and it was stopping me from making the connection.

Two nights ago I was meditating in my Safe Place. This is a place inside myself where it is only me. I can't always get there because the voices and anxiety can get so loud that I can't find the stillness. But if I can really get deep into the meditation, I can get there. It is a dome of faceted crystal that holds everything else out - everything except The Morrigan. Over the years she is the ONLY thing that join me in the Safe Place. The floor of the dome is scattered with shimmering black raven wings from her past visits and there are obsidian-like facets in the crystal where she has helped me mend cracks and fissures.

Well, two nights ago I got to my Safe Place and was enjoying the solitude and watching light play off of the crystal. Then a saying popped into my head, one I really dislike. It is one of those inspirational sayings that has never made sense to me. It goes "A bird sitting on a tree is never afraid of the branch breaking, because her trust is not on the branch but on her own wings." It sounds good on the surface - but I DO fear the branch will break because I don't have wings.

And that was when she came. She wrapped her huge, soft, Raven wings around me and whispered "My dear Indigo Child, I am your wings." (She always calls me that, and She is the only one to do so. I don't really know why.) She cradled me in her arms and her wings and let me sob at the relief and joy that She was with me again. And without words she showed me that my task wasn't to fight, but to heal and clean the battlefield of all its ugliness. I must spread kindness to combat the hate and let my smile shine wherever I go. I am not useless - I am doing vital work simply by writing, painting, and going out and saying hello to strangers and telling my friends how beautiful they are inside and out.

Yes, I have schizophrenia. Yes, I do hear voices that are not real. But there are some who are, I just have to stop and listen so I can hear love and encouragement that is hidden beneath the shouting voices of hate.

Listen. Truly listen. This world is full of beauty if you just take the time to look.

Dazed and Confused

It never ceases to amaze me just how easy it is to mess up the routine that keeps me functioning. This past week my Dad's schedule changed from Friday through Monday to Saturday through Tuesday. This, of course, completely messed up my comprehension of what day of the week it was. Yes, I look at the calendar in the kitchen regularly, but my Dad's work schedule is a constant that help me keep track.

Well, I was totally confused all week. I thought Tuesday was Monday, that Wednesday was Tuesday, etc. I didn't have any appointments so it wasn't a huge deal. But on Saturday I had my monthly appointment to get my hair buzzed off. First off, I don't usually see Nikita on Saturdays, but she had been on vacation so I had to move the appointment from my usual Thursday or Friday. So, double confusion. I went for my appointment and, like always, I felt good and relaxed afterward (she includes an awesome scalp and neck massage). Naturally, I didn't feel like going home yet so I decided to stop at Target and pick up a couple of things.

Yeah, Friday at 2 p.m. is the perfect time to shop. Saturday at 2 p.m. is a complete madhouse. I started walking through the store and I couldn't figure out why it was so busy. It was an absolute crush with babies crying and people pushing their carts every which way. It didn't take long for me to reach total overload. I couldn't remember what I had gone in for and I was shaking so bad that I dropped my cane twice. The second time I had trouble picking it up because people were just walking over it. One lady tried to just push her cart over it and gave me a dirty look when she couldn't. Another lady sent her son - probably about 6 years old - over to pick it up for me. I smiled and said thank you, and then made my way slowly to the cafe at the front of the store.

I was shaking so bad by that time I knew I couldn't drive. Fortunately the cafe was fairly empty and I got a smoothie and just sat at one of the tables, focusing on the cup and nothing else until I finally started to calm down. It was then that it finally occurred to me that it was Saturday, not Friday, and I wanted to kick myself for being so brain dead.

I must have been sitting there with that smoothie cup for at least 40 minutes. I got a water to go and made my way to the car. I sat in the seat with the AC going while I drank the water and then finally felt OK to drive. I got home, took my anxiety meds, and then crashed for a couple of hours. Even after the nap I felt drained and confused. It had been so long since I had been overwhelmed like that I had forgotten what it felt like. I have become a pro at knowing when the slow times are to shop or go out to eat. The trick is knowing what day it is.

I am feeling better today. I still haven't done much - I didn't have enough focus to paint or read, I just played mindless games on the computer and watched TV. It's like my brain is still shaking even though my body has recovered.

So ... note to self ... double check what day it is before going out.

Mourning and Fighting Paranoia

I am slowly crawling out of the physical health breakdown and subsequent mental health decline. The second Xolair shot is slowly making itself known and the hives have been waning - provided I don't get myself too stressed. Of course, with the weather being unseasonably hot - it "only" hit 106 today - just leaving the house to run an errand is a lot of stress on my body. Still, there has been progress.

And then a bombshell hit. I have never been overly affected by the death of a celebrity. Robin Williams' suicide was sad and I had a fit of depression for a couple of weeks, but usually I get sad and chat about it but they are basically strangers so it isn't immediate. But the suicide of Chester Bennington, one of the front men for Linkin Park, hit me really hard. His music has literally saved my life and it still keeps me together. His lyrics are brilliant and insightful and obviously came from the mind of someone who has been in the depths of addiction and depression. That, of course, is why his death hit not only me but a multitude of people who fight mental illness.

Yesterday I was so depressed and agitated that I couldn't stay in the house. I was on the verge of cutting myself, the depression was so bad. I have no hair to yank out and I cut my fingernails down to the quick so I wouldn't gouge my skin. I had no outlet for the mental pain. My first stop was the tattoo shop that I love. I wasn't really expecting anyone to have an opening on a Saturday, but I was still crushed that I couldn't get inked right then. The pain of the needles would help with the itch to hurt myself and I would be covering up one of the spots I had cut myself in the past (the inside of my forearms are already tattooed just for that reason). I made an appointment for Tuesday, even though I can't really afford it. I am justifying it as a medical expense. It is something I NEED to keep myself from something more drastic.

I drove around town a bit, stopped and got some lunch, and then walked around PetSmart and looked at the dogs and cats up for adoption. The heat finally got to me - I was feeling dizzy and nauseated from it - so I finally wandered home. I felt a bit better, although I rubbed the skin raw around the earrings in my right ear, and I watched a movie and had a light, cold dinner so I wouldn't make myself sick. But the whole time I had "Heavy" - one of Linkin Park's songs from their latest album - looping in my head and it was all I could do to not start crying.

Well, I stressed myself out way too much. By bedtime I was all out in hives again, my stomach was irritated, my sinuses were irritated and draining down the back, and I was utterly exhausted. I was so miserable I couldn't sleep and by midnight the draining sinuses and my upset stomach left me dry heaving for about 10 minutes. I ended up watching Netflix on my computer for a couple of hours and finally tried to sleep again. I dozed on and off until my med alarm went off at 9 a.m. I hurt so bad I took my 9 a.m. meds and my breakfast meds - which include my main pain med Tramadol - at the same time. Because I took the Tramadol so early, I ended up taking an extra one, spacing them out by 4 hours.

Well, I finally fell asleep and woke up about noon feeling a bit better. My stomach was still touchy but I managed breakfast. And I was feeling better than I should have been. I still felt sick, but I wasn't nearly as achy as I expected and I had more energy than I should have after not sleeping most of the night.

It was while I was taking my nighttime meds that it occurred to me that I likely felt better because I had taken 4 Tramadol throughout the day at set 4-hour intervals instead of just 3 spaced out to 6 hours. More pain meds = less pain. Yes, that should be obvious, but I am seriously paranoid about taking ANY medication. And I am especially paranoid of taking something like Tramadol. I had a scare last October prior to my hysterectomy where I ODed on the Tramadol because my instructions didn't say that I could only take 400 mg per 24 hours. I was in major pain and was taking 600 mg per day and it made me sick and almost landed me in the ER. Ever since I have taken 3 pills - 150 mg - per day and have been terrified to take any more than that.

I had to talk it out with my Mom to convince myself that I really should switch to the 4 pills a day instead of 3. It is still well below what I can take, but I just couldn't convince myself to change it. My Mom had to give me her Mother/Former RN look to get me to open the medicine cabinet and change my med planners. I am still having fits over it. Paranoia isn't easily overcome. And, of course, fighting the paranoia puts me back to having that itch to hurt myself. The good news is I found my worry stone and hopefully I can hold off until Tuesday and my new tattoo.

Wow, this is a long entry. I guess I just needed to get it all down in words. I am starting to have trouble typing because I'm getting shaky. Time to try that sleep thing again. And tomorrow is another day.

The Little Things

The old saying says "don't sweat the little things". Well, I unfortunately don't have that choice. The littlest thing can bring everything crashing down.

I have had an absolutely miserable week, to the point that I couldn't even talk about it. All I could think or do was swear and try to keep myself from getting completely suicidal. I am hoping - knock on wood - that I am finally pulling out of it.

It started with one small thing: My second shot of Xolair, the new medication we are trying to control the chronic hives and other inflammation - was delayed a week because of the July Fourth holiday. The Xolair was definitely working; there was drastic improvement. But that fifth week brought the hives and the GI tract inflammation back in full force. With it, of course, came all the anxiety and hallucinations and everything else that comes with my being miserable and not able to eat or sleep well.

And then came the second little thing: I was so exhausted that I slept until almost 1 p.m. a couple of days after getting the injections. This meant that my midday medications, which are taken at different times depending on when I get out of bed and take my morning meds, would be taken at the same time as my afternoon anxiety medications, which are always taken at the same time. Well, you can guess what happened - I took the anxiety meds but not the others. Since my midday meds include Tylenol and Tramadol, this meant that by bedtime I was in major amounts of pain and couldn't figure out why. My nighttime meds, which also have Tylenol and Tramadol, hardly made a dent in the pain and the stress on my body had me vomiting and breaking out in major hives. I had to take extra Tramadol at about 2 a.m. - something I try to avoid at all cost - and I hardly slept, just dozed on and off. This made the next day even worse because I was beyond exhausted and any attempt at taking a nap was interrupted by major itching, muscle spasms, or vomiting.

Well, I'll just say that it has taken days for things to finally get almost manageable. I am still waiting for the Xolair to get back into my system enough to take the hives down again. They are waning, but I still smell like a mix of Benedryl cream and hydrocortisone lotion. The pain is down enough that I can at least function and the depression is manageable again. I even convinced myself to get the paints out today and I worked on a project I've been wanting to get done.

But the takeaway from this is that my life is just miserable. I hate saying that, let alone putting it in words, but it really is. My physical and mental illnesses work together to keep me from getting anywhere. More old saying: Nothing lasts forever, things will get better, etc. Bullshit. When you have a chronic illness or a mix of chronic illnesses, things really do last forever. Yes, they can try to stabilize things, but it just takes a little thing to throw all the progress in the trash. I am right back to screaming at the heavens and asking why the fuck I was given all of this. It is really hard to not be suicidal when you just can't see an end to the pain, the confusion, the stress, the paranoia, the depression, the anxiety ... the whole fucking mess.

I am holding on. It helps to paint again, to put that color on a canvas and make them swirl and dance together. I have a painting on my computer desktop that a friend - I don't remember who - posted on Facebook. It says "I'm going to make everything around me more beautiful - that will be my life." I am clinging to that. I am looking at a streak of green paint on my wrist that somehow escaped the hand washing and it almost makes me smile. And that almost is better than nothing.

Pressure

Well, it has been several months since my therapist of 5 years left the area. I tried a couple of new people, but they didn't quite mesh. And so I have let the therapist search slide. I'm not sure if that is good or bad.

I have been doing a lot of self searching and self discovery. I have also been able to get out in public a bit more. I am widening my comfort zone to beyond the walls of the house, which is a good thing. Overall I've been doing OK. Yes, I had a meltdown at the tail end of the family reunion, but that was because my comfort zone was "invaded" by children and other people. It was WONDERFUL having them here, but it left me with no way out. The meltdown really wasn't unexpected. And I have been physically sick - a cold that was probably carried by one of the kids - and that puts me on edge. But I keep telling myself I'm doing OK.

Unfortunately, without a therapist who really knows me, I have no idea how to check if I really am OK or if I am just trying to be. I also missed my monthly appointment with my psychiatrist because it fell right when my cold was the worst. And so now I sit and drive myself crazy trying to determine if I'm really OK or I'm lying to myself about being OK. Yes, I can go from being OK to not being OK just by stressing over it. Let's hear it for an anxious, overly analytical brain.

I feel like I'm under pressure, like I used to feel when I was on a hard deadline. I keep getting anxious about not having my bedroom shelves rearranged yet or not posting here on the blog or doing a video blog with my new webcam (it finally came). Even right now I feel like I HAVE to type in this blog entry and post it because I haven't in a while and I just have to keep current. I keep telling myself I am not under any deadline for any of it, but my brain doesn't listen.

At this point, I don't know if searching for a new therapist would help or hurt. If I can find someone compatible, I will still have that "getting to know you" period where things are awkward. And if I start the search again, I will have just one more thing to feel pressure about. Ugh! I'm stressing just thinking about it.

And now I have the Queen song running through my head. At least it's a good song.

Letting Go Of The Past

It is so hard to not cling to the past, especially since my life has changed so drastically in the past 5 years. I can no longer work. I have trouble getting around, even to just go to the store. I have trouble focusing. I have severe anxiety. I have trouble getting out of bed. I have days when I can barely take care of myself. I can't clean my own house. I am in pain every single moment of every single day. I am on so many meds to control my illnesses that I can barely put a thought together. I don't have hair. I communicate with most of my friends strictly online.

I compare myself to who I was 10 years ago and I just want to curl up and die. And yes, that is a completely accurate statement.

A few days ago I posted a picture on Facebook of one corner of my bedroom, which is the only space that is truly mine (actually it belongs to the cats, but they let me live there). I posted that I finally had one corner of my room "finished" the way I wanted. Yesterday I ripped it down. I pulled everything off of the shelves and started getting rid of things. These things were my past. They were no longer me. It hurt like hell to get rid of these things, but it had to happen.

The first things to go were my ritual tools and Tarot decks. Technically I am still an ordained Priestess in the Wiccan Tradition, but I no longer hold rituals for people. I no longer officiate weddings, bless babies, or send the soul on after death. I sobbed as a scoured my offering bowls and chalices with salt. Most of them were wood - I have always been an Earth Witch - and they are now in the garden, given back to the Earth. My wooden athame is also in the garden under a rose bush, planted as deeply as I could into the ground. Several crystals and other stones have also found new lives scattered among the rosemary, forget-me-nots, and lavender. The ceramic bowls have been cleansed and can now be used for ice cream or cereal.

I used my cauldron one last time to burn the sage and meadowsweet and the locks of hair I had used in ritual. The hair was doubly hard because I know I will never again have a braid that hangs to my waist. Once things had cooled, the ashes went under some plants that needed extra fertilizer and the cauldron was also scoured with salt. I plan to use it as a planter - it's days of holding burnt offerings is over. I had no means to burn the 3 Tarot decks, so they were cut to pieces. I never was truly comfortable with the traditional Tarot, but it was still hard letting go. My hand-sewn ritual robe was also cut to pieces and discarded, damp from my tears.

There is a lot missing now, from my life and from my shelves. I still have two divination decks, just not a Tarot deck. I kept many of the small stones to use in planters and candle bowls. And I am still going through things, deciding if each and every thing is vital to me as my life is now or if it is simply me clinging to the past.

I am feeling a bit adrift right now. I am still deeply spiritual, but the Wiccan path just wasn't quite fitting any more. Mainly this is because it has deep roots in northern Europe and it doesn't quite fit with the desert Southwest of the USA. For instance, it is hard to celebrate the darkness of Midwinter when it is sunny and 70 degrees outside. Native American Shamanism fits a bit better, but it really isn't me, either. As always, I will have to find my own path to follow, one that allows for some sort of meaning for my mental and physical illnesses.

I have put a couple of things back on the shelves and I have my "Fairy Lights" on. These are tiny lights on a copper strand that one of my sisters gave me a couple of years ago. They always add a sense of whimsy when I turn them on and they are helping that new unsteady ground firm up just a bit. Right now they are reflecting on my Maneki Neko and a ceramic bowl full of bits of lava rock - and that sums me up pretty well. I love the whimsy, the luck, the science, and the products of Earth at its newest.

Namaste, Good Wishes, Blessed Be.

Friends Are The Best Therapy

OK, I actually think cats are the best therapy, but friends are a very close second. Nothing stops suicidal thoughts, depressive down-spirals, or anxiety fits like have a friend tell you they care and they have your back.

I managed to get myself out to a Gala event last month and it was great. But there were so many people and it was so busy, there wasn't a lot of chatting or catching up. Well, on Friday I managed to drag my sorry ass to another event. This one was informal and private - that means that Elise, the person who was holding the event, thought that I was enough of a friend that she issued the invite. That in and of itself made me feel wanted and loved. And when I posted my RSVP, a bunch of people replied that they were so glad I was going.

Well, the day arrived and I was feeling crappy. I was still trying to get the Prednisone out of my system and waiting to see if the Xolair injections were going to handle the hives. It was 103 outside, I was having major sweats, and I was nauseated. I had decided early in the afternoon that I wouldn't be able to go. I just didn't feel well enough. And then I lay down for a much-needed nap.

I woke up from my nap still feeling rather crappy, but I decided to hell with it, I was going. Even if I only stayed for 20 minutes, I was still going to show up. Well, I ended up staying for 2 hours. And I had friends coming out of the woodwork. There were so many people there whom I knew and they were all so glad to see me. I was hugged until my ribs were sore. They helped me with my plate of food and my drinks so I didn't have to juggle with my cane and they made sure I wasn't sitting by myself. I met a couple of people face-to-face whom I had only known on Facebook and we chatted and found so many things in common. Oh, it was so wonderful.

I made myself leave at 9 p.m. because I knew I had to get myself calmed down and take my meds and there were people who really wanted me to stay longer. It was so beautiful. I had to stop on the way home because I started crying I was so happy.

This will definitely be a turning point. I now know I can go out to an event and talk to people and be ME and they won't all run screaming. I CAN do this. And I want to do it again. And I am so blessed to have so many awesome people in my life who care what happens to me. We now have another huge roadblock set up in my brain for when I start feeling worthless or suicidal. Knowing that many people care helps me keep fighting.

Finding The Patterns

If you have been following me or have known me for a while, you will know that one of my "things" is that I have to be in control. I learned through years of therapy that this is my response to the combination of my mind being so chaotic and my schizophrenia trying to find a patter to all of it. I keep thinking that if I could just get enough data, I can make it all fall into place and work like it's supposed to.

Of course, that never happens. I have literally sat on the floor sobbing that there isn't enough data, I don't have enough data points to make the pattern readable. And that is just the mental side of things. Then there are my autoimmune diseases and other physical ailments that complicate it and make it necessary to get even MORE data to make it all fall into place.

To some extent I have succeeded. By reading research papers and journals and talking to various doctors, I have learned that a lot of my ailments are connected. My mental illness and my chronic nerve and muscle pain (often called fibromyalgia) are connected because they are all disruptions in the proper function of my central nervous system. And they are now finding autoimmune connections to this type of dysfunction. I KNEW there was a link. What I could see of the pattern hinted at it. Now I just wish someone could find a way to fix it. That research, unfortunately, is decades away from having a practical application.

Today I found another connection. I had my follow-up appointment with the immunologist and all I had to report was that increasing the dosage on the Loratadine had done nothing to improve the chronic hives. I am still completely miserable and am having trouble sleeping because of the itching and pain. I have also been completely nauseated and have had trouble keeping my meds down after taking them in the evening. I happened to mention it, and the doctor confirmed what I suspected: When I have that type of autoimmune inflammation on my skin, it is also happening throughout the GI tract. So, when the hives flare up, I get nauseated and have GI trouble and YES they are connected.

With that in mind, he decided to forgo what was going to be step 2 to controlling the hives and we are going to step 3. If we can get Medicare's approval (and he said it usually isn't a problem) we are going with Xolair, a monthly injection designed specifically to control hives or asthma that don't respond to typical medication. I don't know how long it will take to get the approval, but I hope it is soon. I am going nucking futs with the hives and nausea.

In the meantime, I am feeling completely out of control. Yes, we have some answers and a plan, but I am still trying to find a pattern. Maybe the hives would go away if I stopped eating this or that. Did they get worse when I went to bed later than usual? Could it be the heat? Is that causing the flare-up? There has to be something I'm missing, something that I can control that will fix this. This isn't the case, of course. I am already on a very restricted diet (and wouldn't that be wonderful if this new medication fixed some of my GI issues and I could relax the regimen a bit?) and I know logically that what I am eating is not causing this. But that doesn't stop me from going over it again and again in my head to find some connection to eating peaches and feeling more tired.

Sometimes this need to find patterns is a good thing. But usually it is just a one-way trip to Anxiety Land.

How Music Saved Me

I have always depended on music to keep me grounded. When I was younger I listened to calm, quiet music. I was a huge fan of Mannheim Steamroller, Yanni (go ahead and laugh), Enya, and other meditation-friendly artists. Later I got into Led Zepplin and '80s rock - Metallica, Def Leppard, and other such bands. I still steered toward the slower, ballad-type songs. I needed things calm and collected to keep my mind in check.

In mid 2012 I started to break. And I mean a MAJOR break. And my taste in music changed. The slower, quieter music didn't work any more. My mind was so loud and chaotic, it just provided a quiet "room" for the colors and voices to bounce around in. I started listening to louder music, even some rap, which I had abhorred up until then. My mind continued to shatter and everything got louder and even more chaotic. I had zero control over the voices; my only option was to drown them out.

And physically I was breaking as well. I didn't know what it was at the time, but I developed chostochondritis in which the connective tissue in the rib cage becomes inflamed. Every day at work was agony as I lifted and filed and sat in a computer chair. And I could "hear" what people were thinking about me, and it wasn't pleasant. Often these voices were louder than the real ones and I was having trouble telling them apart. finally, on September 26, 2012, I left work in the middle of the day and I was never able to go back. I was in pain, physically and mentally, and I couldn't take it any more.

I had no way to pay rent. My roommate had moved out. I had tentative plans to move in with my parents, but the thought of packing was as terrifying as the thought of going back to work. For the first time in more than a decade I had serious thoughts of suicide. I even had a plan, but fortunately that plan needed preparation so I had a couple of days before I could die.

And that was when I heard the song, the one that saved my life. I was listening to Pandora on my computer and Linkin Park's song "Crawling" came on. It was loud and harsh and made the noise in my head fade just enough for me to hear the lyrics:

There's something inside me
That pulls beneath the surface
Consuming, confusing
This lack of self control I fear
Is never ending, controlling
Crawling in my skin
These wounds they will not heal
Fear is how I fall
Confusing what is real

Those words said exactly what I was feeling. And for the first time I knew, I was absolutely sure, that someone out there was going through what I was. Instead of going through with my plan to kill myself, I sent a message to a friend I knew in the psychiatric community and asked her if she knew anyone in the area who specialized in schizophrenia. She directed me to Dr. Nielsen, who has been my psychiatrist ever since.

My favorite band now is Linkin Park. So many of their music has lyrics that speak to my soul. And despite being on meds now that quiet my mind, I still prefer the loud, harsh, almost grating music that saved me almost 5 years ago.

You can find a list of some of my favorite songs on my YouTube channel. The list is always growing, of course. And if you don't like loud music you can always look up the lyrics. Meaningful lyrics are an absolute must to make my Favorites list.

Music, no matter what sound you prefer, is a powerful too in fighting mental illness. If you haven't found something that works for you, keep looking. There is literally a world of tunes out there.

Holiday angst

I have no idea why holidays of any kind always make me anxious. But then I've never really understood why my brain does what it does.

Mother's Day is kind of easy to figure out. I was raised LDS and I live in Utah and I never had children. No matter how much time passes or how much therapy I have, Mother's Day still triggers that ingrained belief that a woman's purpose is to have and raise children. Year after year - even though I get holiday wishes from nieces and nephews and siblings and friends - I still feel like I'm standing outside the gates of a party I should have been invited to but wasn't.

And then there is my relationship with my own mother. It is great, but I live with my parents so I'm always here. Yes, I tell her I love her and I give her a card and get her a gift and all of that, but it doesn't seem to me that it brings the same smile to her face as getting something in the mail or getting a phone call. I know I'm probably imagining it. I know she loves me just as much as my brother and sisters, but on holidays it seems less. And I have to hear about how sad she is that there were no cards in the mail and no one had called. I feel responsible somehow for the fact that she hasn't heard from anyone else. I end up texting my siblings to tell them to call her just so I don't have to see her mope. It is completely unnecessary, I'm sure. But I can't help feeling responsible for whether my mom is happy or not. I end up sitting in the same room as her no matter what she is doing. I sat on the couch for close to an hour just listening to her side of conversations with two of my sisters. I couldn't watch TV because she was on the phone, but I didn't dare leave the room and watch something in my room because it's her holiday and we're supposed to spend it together. By the end of it I was so agitated I could barely sit still.

I am very fortunate to still have my mom here to hug. And given my wonderful smorgasbord of genetic illnesses it is a good thing that I ended up being infertile. But Mother's Day still leaves me anxious and depressed.

My hospital stay never happened

I was hospitalized for 7 days this past March – and it never happened.

Here is a little bit of background: I am 45 years old and I have schizophrenia. To be specific, I have schizoaffective disorder-bipolar type combined with clinical depression and generalized anxiety disorder. I work very hard to stay as stable as I can. I take my medications despite a paranoia about pills being poison. I keep my regular appointments with my psychiatrist, my therapist, and my general practitioner. On good days I can drive and go meet someone for coffee. On bad days it is an accomplishment just to get dressed and feed myself. If I am lucky, I have more good days than bad.

Sometimes, despite all my attempts to stay stable, I have very bad days. I was having a bad day and one of my stronger delusions started to take over. I was able to recognize that it was getting too bad for me to handle and my mom got me to the ER just in time for it to blow up into full psychosis. I was given emergency medications to calm me down and I was admitted to the Behavioral Medicine Department.

And this is where I disappear. You see, the so-called Behavior Medicine Department (B-Med for short) is really the short-stay psychiatric lockdown ward. And you are invisible to the outside world. No one – not even doctors – can call in or even know you are there unless they have a code. All records are kept separate from other medical records. It is an isolated bubble designed to keep the patients calm and get them the specific treatment they need. It really does work, and I left a week later with my medications tweaked and my mind back under my control.

A few weeks later I had a regular appointment with my general practitioner. They had no record of the change in my medications, which was strange. I got the records updated and then waited to see the doctor. We talked about a few things and then I mentioned that my anxiety was still up after the hospital stay, but I was working on it. And he had no idea what I was talking about. He checked my patient records and all it had was the ER visit. Then I mentioned that the stay had been in B-Med and he just nodded. Psychiatric hospital stays, he said, are never put in general patient records. They are kept separate and he had no access. And he was not allowed to add anything about it to the record, even though we were talking about it in our visit.

Let’s think about that for a moment. My general practitioner has no access to my psychiatric treatment records. The fear of someone finding out I have a mental illness and was treated for it in the hospital is so strong that my own doctor can’t know about it.

During Mental Health Month there is a lot of talk about breaking the stigma surrounding mental illness. Well, there is a long way to go. If they can’t even talk about it between doctors, how are we going to talk about it in public? How are we going to get integrated health care if my hospital visit essentially never happened?

I have schizophrenia. I want all of my health care providers to know that. And so should anyone else with a mental illness. 

Did Anyone Get The Number Of That Truck?

So, just when I thought things were going OK-ish, I got hit by a Mack truck of a psychotic episode. I have never had one hit me that hard and fast before. Fortunately it was also - we hope - just as quickly fixed.

I saw my therapist Shannon last Wednesday and I was anxious but neither she nor I noticed any signs of impending doom. We talked out some of my anxiety triggers and that evening I chatted with my sisters about our family reunion coming up in June. They were awesome (as always) and reassured me on some of my concerns about the get together. Thursday I was feeling better anxiety-wise, but for the first time in I don't know how long I heard a very loud, very distinct voice saying "I hate myself." It was disconcerting to say the least.

By Friday afternoon I was hearing more voices and one of my deep-seated delusions was starting to crawl to the surface. It involves worms wriggling through my brain eating my thoughts and memories and synapses. I told myself right then that when I saw my psychiatrist on Tuesday I would talk about increasing the dosage on my antipsychotic, which we had discussed before. We had just held off to see what happened with the hormone changes after the hysterectomy.

Well, I didn't make it to the Tuesday appointment. By Sunday afternoon I was getting completely overwhelmed and I told my mom I had to get to the ER. By sheer luck - or divine intervention - my uncle John, my mom's brother, had stopped to visit on his way home to Las Vegas. My mom can't drive and there was no way I could have and my Dad wouldn't get home from work until late evening. But John was there and he was able to drive my mom and I to the hospital.

By the time we got there I was pretty much uncommunicative. I don't remember much of it. I know they gave me a shot of something that made me go completely limp, which at least stopped the sobbing. My mom had to sign my intake paperwork (yes, kids, it is a good idea to have power of attorney paperwork on hand for desperate situations). As I lay there exhausted and sweating and shaking, I did something I have never done before when faced with a delusion: I gave up. I stopped fighting it. I just lay there and let it take over. I was just too tired to push it away or try to get rid of it.

I don't remember the rest of the evening or even most of the next day. I was checked into B-Med, the Behavioral Medicine lock-down unit. The psychiatrist there increased the dosage on my antipsychotic, just like I was going to ask mine to do. I still wasn't fighting. I just lay in bed and let the voices and worms do whatever they wanted. I slept a lot and only came out when they told me I had to eat.

By the time they woke me up for my morning meds on Tuesday things had quieted significantly, and that taught me a very valuable lesson. First, I can trust myself to know when I need to get help and there is someplace safe for me to get that help right close to home. Second, I can give in and rest and let the psychosis run its course and come out OK on the other side. In face, by doing that I recovered far faster than I ever have in the past. When I fight it, I wear out my mind and my body with anxiety attacks and just shaking and sobbing. But I was always afraid that if I gave in I would be lost in it forever. Instead, I got much-needed rest and my brain basically did a reset.

I got out of the hospital this morning. I am still tired and the med increase hasn't taken full effect yet, but I feel OK. I am still shaky, mainly because I'm not positive what triggered the episode in the first place. But I know I have people to help me if things go sideways. I see my psychiatrist - for real this time - this coming Tuesday and we will have a lot to talk about. Shannon, my therapist, actually stopped by the B-Med unit this morning while I was having breakfast and we chatted a bit. I see her this coming Wednesday again and we both know what to focus on in our session.

And through it all I could feel the love from my friends and family. I know they say that prayer and good vibes don't do anything. It's true that it doesn't feed flood victims or find a cure for cancer. But when you are fighting mental illness, knowing that your brother and sisters and parents and friends have your back - even if it's from a distance - means the world.

Now I'm home with my real coffee and soft blankets and soft towels and purring cats and I am just so grateful for all of it.

Now we just need to install a stop sign or a traffic light so I don't get hit by any more trucks.

Finding Myself

I have lived my entire life trying to conform to what I perceived as normal. I would like what my friends and peers liked. I tried to dress like them. I let them shape me. I rarely gave my opinion because my views were "wrong". Even as a child I knew that I saw and thought about things differently. After a few time being called freak or weirdo, I learned to just nod my head and go along with it.

I have had a few true friends with whom I could be more of myself. I flourished in those friendships, but then there was always a crash, a breakdown. And since I never dared to let anyone know about my psychotic breaks, I would hide them by moving, changing, leaving everything behind. I have been blessed to have friends who sought me out and wouldn't let me go away completely. Facebook has been a blessing in this way - they were able to find me, start simple, take it slow, and let me ease back into communications with them.

But despite these true friends, I still hid. I conformed as much as I could with coworkers and bosses. The few times I tried to truly express myself ended up being too honest and too aggressive from someone who was always quiet and uncomplaining. Jobs ended, shallow friendships disappeared, and I moved on again and again, my belief that I had to hide myself becoming stronger.

In some ways my major psychotic break 4 1/2 years ago was a blessing. I couldn't hide any more. My family learned about the schizophrenia I had been dealing with alone since I was a child. I became sheltered and afraid of the world. I couldn't work or go to social events any more. I was isolated from all those people I thought of as normal and I no longer knew how to act, to dress, to talk, to believe. I lost so many friends, although I have learned since that those who abandoned me weren't truly friends. I learned who my true friends were and just how wonderful and accepting and supportive my family is.

And now, after being with just myself for so long, I am finally discovering who I really am. I am not normal, whatever that means. I am a total pacifist and can't tolerate or even understand violence of any kind, against humans or animals. I have learned after shaving my head because of the trichotillomania so many times that I actually like not having hair. It is so much easier and somehow a short buzz cut just seems more like "me." I have gotten several tattoos already, and not the simple butterfly or flower that I would have gotten to be "normal". They are intricate and stunning and have meanings that speak to my soul. I have a semi-colon for suicide awareness tattooed on my right thumb so it is what everyone sees when we shake hands. I have NOH8 - no hate - tattooed on the other so it can be seen by all. "Harm None" is also prominent on my right arm, right below the tat of my totem, the snow leopard. And on my left arm is a dragon to remind me that I am strong.

I just got 3 new piercings in my upper left ear. Eventually they will be hoops. And I will get my right ear tattooed so that anyone who sees me knows I am not a conformist. I am not normal. I am different. And tattoos are planned on my arms - all in places where they can be seen. I don't believe in getting art and hiding it.

Today I looked in the mirror and smiled. I had my hair buzzed today so there is just the barest bit of fuzz on my head. The new piercings are just studs right now, but they are something that I would never have gotten when surrounded by "normal" people. They look like me. If you can't see my DD breasts, I look rather androgynous - and I love it. I am decorating myself the way I want to. I am finding gems and art that speak to me and to the world just who I really am. And I love it.

I am finally finding out who I really am on the inside. And I have found the strength to let it be expressed on the outside. I am finding myself.

Precarious

I am finally recovering from that nasty virus, although my mental state is still a bit dodgy. I'm still having some problems with random anxiety attacks and my brain feels like Swiss cheese. Keeping a thought going or concentrating on anything is a no go.

Yesterday I had my monthly appointment with my psychiatrist and today I saw my therapist. My poor brain had a hard time keeping a conversation going. Fortunately they both know me well and were patient. But we were able to communicate a couple of issues.

First, my mental state is very precarious, more so than I thought. I have been doing quite well and the mix of medications I am on right now is doing me a lot of good. I am by no means "well" - whatever that means - but I have been stable, even with the surgery and the pain associated with it. Then all it took was a virus, with its sleep disruption and vomiting, and I was pushed to the edge. And I really was at the edge. The only thing that kept me from falling into full-blown psychosis was 30 years of experience of keeping my mind wrapped in mental duct tape. It was frightening how being sick physically could push me so far off  balance. I thought I was solidly on the cliff top, at least a few steps from the edge. Instead I found out I have been on Angel's Landing trail where it is only a couple of feet wide and there is a 1,000-foot drop on either side.

Second, I need to put provisions in place for when I get that sick. When I was barely clinging to reality because I was vomiting and had horrible welts and hives all over my body, I should have gone to the ER. I know this now looking back at it and my psychiatrist and therapist both agree. But because I was having a mental break, my paranoia was fully flared up and I truly believed that there was absolutely nothing any doctor could do for me. I was on my own. In other words, when I'm that sick, with my autoimmune diseases flared up and my mind going haywire, I can't trust my own judgement. And now I am angry not only at myself, but also at my parents for not suggesting I go see a doctor. Logically I know I can't blame my parents, after all, I told them I was fine and knew what to do. But logic doesn't always apply. And I have decided that I will have to talk to them about what to do if I get that sick again. I sincerely pray that it doesn't happen again, but I can't count on that.

I am still tired. My body is just worn out and my brain is still fritzing. And I am scared. I am terrified of heights, and I am even more terrified of falling. I don't like learning that my solid ground isn't so solid. I just want to feel safe with myself.

Thrown completely off balance.

I have mentioned before the need to integrate health care so that mental illnesses and physical illnesses are treated equally and together. But beyond that, we also need to acknowledge that even the simplest physical problems can throw a person with a mental illness toward a breakdown or psychosis.

I have been recovering from major surgery and I have been very proud of myself that I haven't had a major breakdown despite the pain and medication problems. One trick was that I was able to stay on my medication and meal schedule, which helped keep me on an even keel.

Well, now I am attempting to recover from the flu and all bets are off. Most people with the flu worry about secondary infections and spreading it to their kids. For me, the flu turns into a full blown war zone with my own body. Forget secondary infections, I have to deal with my own immune system going completely haywire. My sinuses run light a water tap and drain into my lungs, making me cough. The coughing fit will turn into gagging because of the mucus at the back of my throat and my super-sensitive gag reflex will turn it into retching and then full-on vomiting. It gets worse when I try to lay down, so my sleep is severely disrupted. My autoimmune circulatory problems mean I will be running a fever, but my hands and feet will be so cold they are turning blue. My body tries to even things out, and I will swap from shivering to sweating in 10-minute cycles. And then there is the urticaria. The overheated skin triggers my immune system to attack itself in my skin and I break out in itchy welts that just radiate heat. Benedryl and other antihistamines do nothing and hydrocortisone cream can only do so much.

Last night it hit the tipping point and I held on literally by my fingernails. I had been vomiting for 3 days and so the ingestion of my meds was iffy. As a result, I could feel myself getting shaky, physically and mentally. I was dizzy and sick from not being able to keep food down and my skin was so itchy and on fire I was starting to fall into the delusion of having worms under my skin. Yes, this is the fun delusion that landed me in the hospital 3 years ago. I started sobbing, but that made me start coughing again and I sat dry heaving over a wastebasket for I don't know how long.

I was losing it and I know it. I tried some steady breathing and just tried to keep everything calm. I had already pulled out all my eyelashes and I have no hair to pull so I had to outlet for the pain. Skin gouging was only making it worse because of the urticaria. Finally, after scratching one spot so hard it bled, I got my nail clippers and file and very slowly, carefully, and deliberately cut all my fingernails as short as possible. Then with the same deliberation I filed them smooth. I think it took me almost an hour, and it gave me something to focus on that was actually kind of helpful.

I still can't help scratching at the welts on my skin, but with no sharp nails it bruises instead of cuts. I threw up my breakfast this morning, but so far I have kept my dinner in place. Gatorade is helping with the dizziness. I am still sick and miserable and really close to going completely psychotic - all from a virus. I am taking it moment by moment. And I am praying I can sleep tonight.

A New World In Which To Be Brave

I have finally recovered enough from my surgery to sit at my desk again. Oh, it feels so good to be able to type again.

With that said, there is a lot to type about. This election has been fraught with triggers, potholes, anxiety pits, and events that have me downright suicidal. I have had to set my SEP (Someone Else's Problem) Field on maximum. Every Facebook post or news story about what the new president was going to do or who he was going to appoint to what office had to go into the "but it isn't official yet" folder. Ditto with what bills he would repeal or pass or anything else he was saying he would burn down or rip apart or build. I just couldn't deal.

Now it is slowly starting to happen and I am terrified to my core if I let myself think about it. I am one of those most vulnerable people - a woman with a mental disability who survives on Social Security Disability payments and Medicare supplemented with Medicaid. If he does even a fraction of what he says he will, I am screwed.

But I am also heartened. The Women's March was a beautiful thing. We had 1400 marches alone in our little town in Southern Utah - yes, in Utah. And it was peaceful and poetic. And these women and their supporters are determined to do more.

I am sad that I wasn't able to join them in person. I had to join them in spirit instead, and I was cheering on each and every female who took up a sign and walked to protest the treatment of women and everyone else by the male-led oligarchy our government has become.

I hope I can be brave in all this. I pray with all my heart and liver and kidneys and every other organ that things can remain a peaceful protest. A little revolution now and then is a good thing, but that revolution doesn't need to be violent.

And I will have to be brave. My ambitions to be open about my mental and physical illnesses have hit a bit of a stumbling block with this new government. The ground beneath me doesn't seem quite as stable as I proclaim that I am schizophrenic or have anxiety disorders. When out own president mocks the disabled in public and proclaims those on disability are freeloaders, it is easier for my anxiety to see stern, sneering faces instead of kind ones.

Be brave, I whisper to myself. Be brave.