Monday, December 22, 2008

Hearing Voices in the Land of the Rodent: Places to Avoid When You Have Schizophrenia

Yeah, so, I did the Disney Mistake yet again. This is like the fourth time in recent years (since I was diagnosed) that I agreed to go there with my mom. A couple of the other times there were other people with us, but not every time. See, my mom is a Disney fanatic. Her idea of solving life's woes is to get on I-4 and drive to Orlando, the Land of the Rodent. I, myself, am not really a fan of the Mouse. I think Disney is far too expensive, overrated, and generally a mentally and physically exhausting experience which I have a hard time quantifying as "fun". Yet, my mom wanted to go to the Very Merry Christmas party at Land of Rodent, and I agreed to go, since she bought my ticket and since she is my only mother.

Let me just say, I have learned some things over the years about what NOT to do when you have Schizophrenia. I never wrote it down before, and this occurs to me as the main source of my misery over the past four days. I spent two days in bed basically recuperating from Disney damage. Physical and mental damage. So the Number 1 Thing Not to Do when you have Schizophrenia or Schizoaffective Disorder is to spend a day or night or both at Disneyworld walking around and waiting in lines, and listening to 7 billion people's voices and music and being constantly surrounded by sensory input that is overloading your brain from the second you get there.

DO NOT GO TO THE LAND OF THE RODENT. Stop yourself on your way there, buy some oranges, go home. Just do not proceed into Mouseville. That is my advice, both for myself and for anyone else with the disorder(s) I have. Stay home. Watch a Disney movie if you must. But don't go there.

Why? Because the Mouse doesn't like you! That's why. The Mouse exists to make money off of parents, and that is the sole reason it exists. Parents of little children LOVE to drag those children through amusement parks all day and all night, snapping pictures of the crying, sweating, miserable kids the whole time. They even dress their kids up as princesses and make them walk around in ridiculous costumes all day (I kid you not), and all night. This makes them think that they are good parents, but more importantly, they seem to ENJOY THIS. I do not enjoy it. My mom still enjoys it a great deal. I did not EVER enjoy it. Not even when I was a snot-nosed kid myself. Okay, maybe I did for a little while, but not for the whole, exhausting, long day. Typically there would be a nuclear meltdown by my mom, and everything would turn negative pretty quickly. Luckily THAT humiliating kind of scene did not occur this time, but still, it was not really a good experience.

This is my theory on why I can't do Disney:

When I go somewhere, such as a shopping mall or a crowded Walmart, or, in the worst case scenario, Disneyworld, the amount of sensory input that assaults me from every angle simply overwhelms my brain. I know not to do these things now. The lights, the sounds, the scents, the louder sounds, kids screaming, parents yelling at kids, employees screaming over loudspeakers, people cramming into each other with their shopping carts, bells, whistles, the whole shebang at Walmart is too much for me to take. I cannot stand being in a Walmart for long, and if I am in one for long, there is generally some trouble. By trouble, I mean, psychosis. I will hear voices, hear secret messages and see things that I believe are sending me messages. I will also get irritable, panicked, and full of anxiety. I will need to LEAVE WALMART. And all that will go through my mind during the process is, "GET ME OUT OF HERE, NOW!!!"

So, my advice is, if you happen to have Schizophrenia, just don't go to Walmart unless it is 2 AM and not Christmas season - so there may not be anyone else there, and you may survive in tact, if you are lucky.

Don't get me wrong, this is not a social justice issue to me. It has nothing to do with the fact that Walmart goods are made by little kids in Indonesia - probably - or that the company has destroyed small businesses throughout the United States. No, in fact, I like a bargain as much as the next shmuck and I do, actually, go to Walmarts on occasion. But I always regret it. Walmart is not a natural environment for a human being to be trapped in. The amount of input that assaults your neurotransmitters in such an environment, is, in my opinion, kind of like poison. It freaks your brain out. It puts a lot of unnecessary stress on your brain. And when you have a serious mental illness, your brain does not do well with stress.

So I avoid Walmarts whenever possible. The other thing I avoid is shopping malls. For the same reasons listed above. Advice to you? Do not go to the mall for anything, ever. Everything they sell there is overpriced anyway, so that in itself is a good reason NOT to go to a mall. That is what keeps me away from the mall. But the other thing that keeps me away is German. Yeah, when I'm delusional, such as, when I walk through a mall, I hear people speaking to me and about me in English, Spanish, and at my worst points, in German. I don't speak German, but if you have read some of my past blog entries you may understand that this is part of my delusional world where I am a Jewish person headed for a concentration camp. So I hear German. And that is what I think of now, whenever I think of the mall. I think of the people in various languages telling me to "Die" and I think, "Nope. No mall for me today." STAY AWAY FROM THE MALLS. That is my advice to you if you have Schizophrenia. Even if you are on medication. I have been medicated for years, and these problems still happen to me.

So, if I can't do Walmart, and I can't go to a mall (or an airport), you might be thinking, now, "WHY IN THE HELL WOULD YOU GO TO DISNEYWORLD?" And you would be wise to ask me that question. Why would I? Denial, basically. I like to go into this mode where I think, "I'm better now! I can do stuff that everyone else can do. No problem!" And, as you may have guessed, this attitude generally leads to a disaster.

Let me tell you, when you're having hallucinations, especially auditory ones, you don't want to be surrounded by thousands and thousands of people in one giant mob. You also don't want to be on some boat ride watching various mechanical people and animals singing and screaming and dancing and making you completely overwhelmed. You don't want to be walking for five or six hours straight, either, because that will wear you out and add to your overall misery and fatigue. And you don't want to miss the time when you take your medication at night and stay up, out, in Disneyworld, until 1:30 AM. But this, stupidly enough, is what I did the other day. Because my mom asked me to go, so I went. I will not do this again. Just wanted to state that and explain why. Perhaps you will understand.

There are things doctors, therapists, and social workers never tell you. One of those things is, "Don't go to a mall if you have Schizophrenia." Another one is, "Avoid Disneyworld at all costs." These are things I learned on my own, through experience.

Monday, December 15, 2008

When intervention is not enough....

I watch this show, Intervention, even though the people who are featured on it regularly annoy me. Tonight this horribly bad alcoholic, sex addict woman is featured and she is really beyond the pale. She is so pathetic I hardly think that her life could possibly be saved from all the damage she is constantly doing to it. The thing is, I know a lot of alcoholics and drug addicts. It's odd, really, because I have neither of those problems myself, but I am related to people who do and I am friends with people who do and I lived with a guy who did for years. And it's sad to see people suffer from addiction and realize that you can't help them, that they have to help themselves and that, often, they won't help themselves because they don't feel capable of doing so or something.

I have to admit, in a way I would really rather have an addiction than a mental illness. At least, with addiction, there are meetings to go to where you can talk to lots of other people who share your problem, in every city in every part of the United States and many parts of the world. There really aren't a lot of meetings for people coping with mental illnesses. There is one NAMI consumer support group meeting a week in Pinellas County, which is where I live. In contrast, there are several AA meetings and NA meetings and Al-Anon meetings every day in Pinellas County. I know people who have developed a camaraderie in the twelve step groups that gives them a whole new way of life. And, obviously, an addiction is something that - unlike a mental illness - is a behavior that can be stopped. I cannot simply choose to stop being delusional or hearing voices. I try to. All the time. I constantly argue with these abnormalities in my mind, in order to defeat them. But they are not a choice. They are not a drug or a drink I picked up on my own.

I do know a bit about addiction from my past life in an eating disorder. My entire world revolved around anorexia for a number of years. Everything I did, every thought that ran through my head, every book I read, every behavior I exhibited, was all related to weight control and weight loss and self-hatred, and the fear of fat. Now that I actually AM fat, for real, it's amazing to me that I have not killed myself for it, considering that if, a few years ago, I had weighed as much as I weight right now, I would likely have sought out death with a passion, just because I would have despised my body so much. But after I developed psychosis, the eating disorder (and the associated self injury/ cutting disorder) was less of a priority in my head. It was not the biggest demon in the room anymore.

And unlike the eating disorder, which is a behavior-related problem, psychosis is not a behavior. I take all the credit for the years my life revolved around anorexia and cutting, and I also take the credit for getting past those addictions and not doing them anymore. I think that it is possible for most people with addictions to get past them, if they really want to do so. A lot of people may think that this is not true, but I would argue that it is true. Unlike addictions, however, serious mental illnesses are not about making a choice every day. You make a choice to starve yourself, to cut yourself, to drink yourself under the table, to snort your life up your nose or shoot death into your arm. You make that choice, and it is your own responsibility.

I think some people who have not experienced serious mental illnesses assume that they are about choice, too. These people assume that if you really wanted to "pull yourself up by your bootstraps" you could be "normal" again. People have said things like this to me in the past. I think this is a commonly held misconception about mental health. A disease is not the same as an addiction. I don't really know why people with addictions are put on the mental health wards of hospitals even when they don't have any mental illness other than their addiction, but that is what happens where I live, for some reason. The last time I was in the hospital, most of the people there were there for detoxing. I thought this was strange, but I heard htat it had something to do with insurance coverage. Regardless, I also think that many people with addictions have undiagnosed mental health problems, but that is not the point of this post.

I guess my point was that it's kind of interesting many people openly talk about the addictions that they have, or that some family member or friend of theirs has, and these addictions are the focus of numerous television reality shows where people go to rehab and solve their problems, ostensibly. Mental health is not discussed this openly, by either mentally ill people or people related to mentally ill people. It's not the focus of any reality TV shows that I have ever heard of. There's no Schizophrenia house with cameras (and for obvious reasons, that is probably a good thing! I am not sure I'd watch that show myself). In fact, from the way the public acts towards mental illness, the amount of stigma that exists, that shortage of resources and the ever-present SHAME that everyone seems to have about their mental health problems, one might think these problems are rare. They are far from rare, in fact, as you probably know. Two percent of the population has Schizophrenia. The population of the U.S. is approximately 300 million people. Two percent of 300 million is a lot of people (I am not a fan of math). But there's no TV show, and there's also no cure, nor even much hope that one is going to be invented any time soon. There are drugs which are band aids put on oozing, open sores. And that's all there are, in many cases.

I myself am rapidly losing faith in the abilities of any medications to really help me, at this point. I know that they have helped to some extent. It's the extent that is the issue. You cannot swallow a pill and be better forever, most of the time. Maybe it works that way for some people who are lucky, blessed, whatever. But for most people I know, living with a mental illness is a daily battle and it can get quite fatiguing.

I feel quite fatigued these days. Tomorrow, I go back on Risperdal injections. I will let you know how it works out.

I also want to add that I did not mean to undermine or underestimate the serious nature of addictions or the difficulty people have in coping with them. I fully understand that many people have to combat addictions every day for their entire lives. The thing is, everybody knows about that. Everybody has heard about AA. You go to 90 meetings in 90 days after you come out of detox. This is common knowledge. The need for the meetings is common knowledge. Everybody knows an alcoholic or a drug addict or both. Or many. How many people are AWARE that they know someone with Schizophrenia?? There are not a lot of meetings for that, yet, it is a psychological issue as much as it is a neurological one. The battleground is the human mind - just like with an addiction. Just like with an addiction, I have to use my mind to combat my problem, which is a disease that is based in my neurons and not a substance that I purposely put into my own mouth.

This bothers me. The lack of knowlege, I mean, bothers me. The lack of awareness, the lack of appreciation for the gravity of the situation, the lack of meetings, the lack of common knowledge, the lack of people talking about it, all this bothers me. It is strange to me that I am more ashamed of people knowing I have Schizophrenia than many recovered crack addicts are afraid of disclosing their problem. Strange.

Wednesday, December 10, 2008

the lowly worm climbs up a winding stair......

So, it's back to the trenches for me.

Taking the advice of my therapist and my ARNP who prescribes my meds, I am going back on the Risperdal injectons. This is being done under the auspice that it worked well the first time, so let's do it again. The assumption is that I may have a problem with absorbing medications taken by mouth due to a medical issue, such as Celiac Disease, which is found in many people who have other illnesses that I have. So, medication put into the bloodstream via injection may work better.

To be quite honest with you, as I always am here, I do not recall Risperdal making a significant improvement in my life when I took it. What I do recall is that it was a pain in the ass to go to the mental health center every two weeks for a shot that I should be allowed to administer myself. I also recall that I started becoming fat on Risperdal, which was, actually, the reason why I stopped taking it. However, having experienced a lot of "breakthrough" psychosis symptoms on Seroquel, and also on every other antipsychotic I have ever taken, I am willing to try something different again.v So I agreed to go back on the shots.

When you've been on dozens of medications for many years it is hard to recall exactly how effective each one was, what the side effects were, what happened and what did not happen while on that drug, etc....and even if you could figure it out you would have to spend a whole lot of time keeping track of these things to do so. I'm not interested in doing that, so I do not do it. Every health site on the internet for every illness there is will probably advise you to keep a "diary" of your symptoms. I can think of few things that would simultaneously bore and irritate me as much as doing that would, so there is no way in hell I am ever going to do that with my time.

Hence, I am using my hazy memory to try and recall the benefits of Risperdal injections. I know that when I was on them I functioned very well. I know that right now, all day, every day, I have to constantly argue with myself about what is real and what is not real inside my head and I am going with the hope that the shots will take away this constant need to argue reality.

I am also going back to my rheumatologist next week, who I have not seen in the past year, and plan on asking her to test me for Celiac disease, so I can find out whether or not I have this malabsorption problem and also whether or not I need to go on a Gluten free diet. So I'll let you know what happens with that whenever I get the answers.

I'm also back to using eye drops and Restasis all the time because the blurry vision is a problem, and for that reason I cannot see what I am typing right now. There4fore, I will stop typing. Here is a favorite poem of mind that comes to mind:

The Waking

I wake to sleep, and take my waking slow.
I feel my fate in what I cannot fear.
I learn by going where I have to go.

We think by feeling. What is there to know?
I hear my being dance from ear to ear.
I wake to sleep, and take my waking slow.

Of those so close beside me, which are you?
God bless the Ground! I shall walk softly there,
And learn by going where I have to go.

Light takes the Tree; but who can tell us how?
The lowly worm climbs up a winding stair;
I wake to sleep, and take my waking slow.

Great Nature has another thing to do
To you and me, so take the lively air,
And, lovely, learn by going where to go.

This shaking keeps me steady. I should know.
What falls away is always. And is near.
I wake to sleep, and take my waking slow.
I learn by going where I have to go.

-Theodore Roethke

Tuesday, December 09, 2008

The Sahara: dry eyes, Sjogren's Syndrome, health abnormalities

I can see again! Well, most of the time I can, anyway. I don't think I have ever written much here about my vision problem and what causes it, so I will share with you a bit of information on that. I have a disease called Sjogren's Syndrome (pronounced like Show Grins), which is an autoimmune disease that leads to drying of the mucous membranes. The main symptoms are dry eyes and dry mouth. This is no mild kind of dryness, however. No generic eye drops for $2 solve this problem. In fact the dry eyes become so severe, in my case, that I cannot produce tears. Opthomalagist have a test they perform to measure tear production. It involves having a tiny strip of paper stuck in your eye to measure the tear flow. In 1999, I had that test done at an eye clinic in Baltimore, where I was living at the time. The young doctor brought in several other staff members to say, "Look how dry her eyes are!!! She has Sjogren's!", because my eyes failed to produce basically any tears.

I was not diagnosed with Sjogren's by anybody else until about eight years later. I first became physically sick around 1995 when I was 20 years old. I was diagnosed with Fibromyalgia - a muscle pain syndrome which many doctors do not consider to be a very serious problem, and even more doctors did not think it was in 1995. I was told I probably also had Chronic Fatigue Syndrome. In 1999, I saw a specialist who studied Chronic Fatigue Syndrome, and she said I did have it and I also had chronic Orthostatic Hypotension - which means, my blood pressure dropped when I stood up, instead of rising like it was supposed to.

Bear in mind here that before any of these diagnoses were given, I was already diagnosed with depression and prescribed antidepressants. As you might guess, the first answer most doctors had for my physical complaints was that they were all psychosomatic and would go away when I was no longer depressed. They were all wrong.
And I was never "just depressed".

In 2004, I saw a new rheumatologist who said I had Rheumatoid Arthritis, based on my blood work. By that time I was already receiving disability benefits and had been unable to work for years. I was already in daily pain for many years. The future was not looking too bright.

In 2006 - having moved a couple years before - I ended up at yet another rheumatologist's office. She said she is not sure about the RA, but that I definitely have Sjogren's and probably Primary Sjogren's (meaning it's the main problem as opposed to having Lupus with Sjogren's as a secondary problem), though she's not sure of that either.

My dry mouth problem, which had, by then, led to horrible tooth decay and gum disease, was treated for a while with a medication called Salagen. I have not gone to the rheumatologist for about a year, and I definitely need to go back and have that prescription renewed. I also tried Plaquenil - a medication used to treat the autoimmune part of Sjogren's, and then the rheumy took me off of it to see what would happen with my symptoms. Last year I also tripped and broke my ankle - all on my own in my apartment, and was told that I have Osteoporosis too.

For a while, this past year, I did not want to bother with doctors at all. I was able to see - meaning my punctal plugs in my eyes were working. These are tiny pieces of Silicone and other materials are put into the tear duct areas of the eyes, to save tears. I went for some time without daily Restasis - an eye drop that helps with severe dry eyes - but recently, when my Seroquel was increased, the dryness increased to the point that I could no longer read. Dry eyes cause blurry vision, which gets worse throughout the day. I have been on a lot of different medications over the years and had a lot of times where I could not see well enough to read. Often the medications are to blame for worsening my dry eyes to that extent. Such was the case with Seroquel.

I went back to the dry eye specialist eye doctor I found a couple years ago, and had some plugs replaced. He had me go back on the Restasis drops four times a day, and I'm also using artificial tears during the day at work, so that I can read. I had my Seroquel dosage decreased back to 800 mgs. For these reasons, I can read what I am typing right now, which is a big improvement from the blurry vision of the past couple of months!

I have some thoughts on how someone would - seemingly at random - happen to have these health problems in addition to Schizophrenia. I don't think it's random. I think there is some underlying cause to the entire situation which will probably be well understood by the medical profession sometime after I die. I also have a few relatives with other health problems, and I don't think these are all coincidences either. For example, I have slight hypothyroidism and so does my mother and both of my grandmothers, I believe, are also on thyroid medication. I was diagnosed in 1995 or 96 with "irritable bowel syndrome", and I have several family members, on both sides of my family, who either have that or Diverticulitis or some other related GI problem. My sister has Epilepsy and I would not be surprised if whatever is the underlying cause for that is also the underlying cause for my health problems, and we will probably never know the answers to these questions in our lifetimes.

So that's the situation with Sahara Desert Eyes - or Sjogren's Syndrome. The dental decay has also led to me having numerous teeth pulled out because I couldn't afford root canals and I have no dental insurance or money to pay for dental care. Medicare and Medicaid do not cover dental care for adults at all. I no longer have Medicaid anyway, because I am not eligible for it since my part time job last year earned me too much money to be eligible. As you may be aware, there is no dental care that comes cheap, even for people who are on disability. So you deal with the decay or you get your teeth pulled out, and that is basically all that can be done.

Sjogren's can also lead to problems with major organs, and cancer, and other things, but hopefully I will not run into those any time soon. I have enough on my plate with Schizoaffective Disorder, Endometriosis, Sjogren's Syndrome, Fibromyalgia, Osteoporosis, and some related other things for now, and, as a rule, I try to never think about any of these things if I can possibly avoid doing so. I have learned one thing above all others about health problems over the years: the more you think about them, the more depressed you will be. Better to not think about it when possible. That is my philosophy. I choose not to let me life revolve around illness anymore. In some respects, this may not be the best approach to take. My failure to pay attention to my health for most of the past year led me to having dry eyes again - which will take a while to resolve completely - because I stopped using the drops that can help prevent this problem. So I still have blurry vision and will continue to have it much of the time for months, most likely.

On the other hand, I could spend all my time and energy going to doctors' offices, and watch my entire life turn into a depressing tale of woe involving constant condescenion by arrogant medical praciticioners and rounds and rounds and rounds of tests that lead to no real answers. I prefer to not do that with my life now.