Tuesday, April 27, 2010

grand theft auto and swimming in the sea

Last night, on the way to have dinner with my mother, my sister, who was driving (she is living with me at the moment), pointed at the Mantrap in the shopping center we were entering, my sister and remembered that I used to go there to get my hair cut, some years back. "The last time I went there", I said, "I almost stole the hairdresser's car."

"What?!" my sister asked, "you're telling me you stole another car? This is like the fifth or sixth time I've heard one of these stories." "No, I did not steal it," I explained. "I attempted to take it, because I thought I was supposed to do so, and so I took her car keys. Then I gave them back after she noticed they were missing, and I ran out the door."

Obviously, my sister wanted to know what happend after that. Well, after that I spent some hours running around the parking lot hiding behind cars because I thought the police and the FBI were coming to get me in a car or a helicopter. "But this was five years ago", I explain. "It's no big deal."

It's funny to recall some of these episodes now. In a way, I think it is kind of therapeutic to talk about those times, once in a while. I have so often kept everything close to my chest, and did not tell people about my perceptual problems or bizarre experiences because of fear. But by not talking about it, the fear actually increases, because of the perpetuating of the secrecy which makes the memory a great, looming figure in my mind. To tell someone is to lessen that fear. And so I do, sometimes.

Yes, there were actually five cars altogether. Three that I actually took. One I attempted to take. One where I took the keys and gave them back and ran out the door
of the hair salon. Of the ones I did take, one was my mom's and I totaled it on top of the Sunshine Skyway Bridge by trying to drive off the bridge at top speed. (But, no need to go into that as I've talked about it before enough times.) My brother's car was another one, and I only took that for about a half an hour - on the day I was released from a hospital whilst being totally psychotic and being sent to live in an Assisted Living Facility. 2005, that was. The other car I took, well, that was the Jesus car. The reason I knew I was supposed to take it was that I was Jesus, and the thoughts that penetrated my brain without mercy told me that it was my car, named after me, Christ. Yes, it was a Chrysler. It was old and beat up, but it had my name all over it, so to speak. They thoughts told me more bad things would happen if I didn't claim my reward. The keys were actually in the ignition. I thought it was what I was supposed to do. And so, I did it.

Luckily for me, I never ended up in jail or prison. Many people who live with mental illnesses are not so lucky, including some I know very well.

Today, I am free of the belief that I'm Jesus. I know I don't have to go steal a car any time soon. I actually own a car, and I would never want to drive a Chrysler. I'm a Toyota gal.

Last week, for my marine biology class, I went out snorkeling and exploring an island. Swimming around the wreckage of the cement parts of an old sunken fort from the Spanish American Civil War, I felt so free. Carefree, and freely able to swish and splash freely. I swam through a school of fish, watched a True Tulip Snail carry it's shell across the soft bottom of the Gulf of Mexico, and searched
for additions to my collection of items needed for my class presentation this week. I hadn't been swimming before that in years. Well, one year. I hadn't been snorkeling in years. And it was fun. It was a relief to be able to physically do that which, for some of my life, I really couldn't do, because my fatigue, weakness and muscle pain were so bad, or because I was afraid to be seen in a bathing suit. I'm overweight now. But I'm not totally afraid to be seen in a bathing suit, for life is too short to worry extensively about things lke that. My body can do what I need it to do, and that is enough.

On Egmont Key, the island where we were exploring, I walked down the sand pathway from the beach to the old, barren forts from the Spanish American Civil War days, where there stand small placards about the history of the place. I had special memories of that location. When I was a kid, we had a boat and my dad would take us out to that island, and I'd go exploring it by myself. I remember when I thought I was the first person to discover that fort, and how much I wanted to live there, on a deserted island, like Swiss Family Robinson. I remember how much fun that was, lying in the crisp sun, eating grapes, or drinking a soda, swimming, building sand castels, collecting shells and sand dollars and whatnot. I had no intrusive thoughts then. I never thought I was anybody other than myself, Jenny. I never thought about killing myself or had any problem with depression. Imagine that. I never saw or heard things that other people did not hear or see. I was healthy. And yeah, I hate this word, but I was "normal".

Walking through those forts and swimming around that island last week, I felt truly free from the person who was tormented by her mind all the time for many recent years, and connected once again with the girl in me who never had to take medication. And it was a nice time.

Sunday, April 18, 2010

hiding under the covers waiting for the world to end

We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
-"Little Gidding", T.S. Eliot

Every so often, I'm doing well, keeping up with school and work, being actively involved with the two organizations I am part of, keeping my laundry done, my apartment clean, and my kitchen stocked with plenty of food. Every so often, I manage this all, for a while.

And then I have this impenetrable sense of being utterly overwhelmed by everything in my life. At those times, there are two options. One - give up and go to bed and lay there and wait to die. Or, force myself to keep going. I generally keep going, but right now it's not happening. There is this combination of fear, disappointment in myself and my lack of accomplishments, severe fatigue, loneliness, regret, anxiety (a lot of anxiety), freaking out about family members' problems, and a general, all-encompassing sense of doom.

This doom is hard to beat. And it makes me feel like I'm 17 and cutting my arms with razor blades again. It makes me feel like I've made no progress at all, like I don't have any coping skills, that nothing I've done is positive or was worthwhile, like I'm floundering alone in the universe and not a single person actually cares about me, like I can't be of use to anyone, and like I am basically a piece of crap.

Right now, I'm hanging on by the skin of my teeth until this semester is over. I want to be finished with college, but I won't be finished at the end of this semester. I won't be finished for a long time - years. I will be partially finished, but that is all. And that is embarrassing, and more importantly, disheartening. I have this fear that I cannot do it all, that I never will be able to do it all, that I might as well just give up now. And then I tell myself, "no, you will not give up", and then this argument goes on, round and round within my head.

I can be doing well for six months or more, without ending up like this, but when I do end up like this, mostly what I feel like is that I want to die to have it all be over. I am not going to harm myself; it is just something worth mentioning because those are the kinds of thoughts that come up. Or, if I don't think of that, I think "I can't do whatever right now, I'll do it tomorrow", and then tomorrow comes. And that's the problem. Mostly the past couple of years have not been like this for me. Or if I do get into one of these phases, I manage to pull myself out pretty quickly, and within a day or two I'm back in the game. But then I get weeks like this week, and I just want to hide in my bed and do nothing, and forget all my obligations, because that is the immature way that my mind sometimes functions. It's embarrassing. But it's true.

Tuesday, April 13, 2010

beginnings and endings

Someone I'm very close to recently got into some serious problems due to alcoholism. I am worried about this person (who I won't name, obviously), and that has been weighing on my mind heavily. The good news is, the person is now in rehab and plans to beat the crippling addiction. A beginning. A new life. I said, "This is the best decision you have ever made in your entire life." I meant that.

Tonight I saw my therapist for the last time that I'll be able to see her as a client. I might run into her in the hallway at the community mental health center some time, but no longer will she be my confidante, the person who I run to with everything that pops up as a problem I need to stamp out. No longer will she be able to do reality checks when my perceptual problems act up. I will no longer have her to confide in, or her advice to absorb, or her kindness to appreciate, or her knowledge to help me understand myself and my life. To say I am going to miss her is a great understatement. I honestly do not know how I'm going to live without her. I will, obviously, but it seems almost impossible right now.

For three years I saw this therapist. Medicare paid, and then, some months back, Medicare decided they would no longer cover therapy with Licensed Mental Health Counselors, and would only pay for treatment with Clinical Social Workers. The difference between these titles made an incredibly horrible impact on many people, because of this Medicare decision. My therapist is not only competent, she's absolutely the best one I've ever met (and I've met quite a few over the years), and she has over 20 years experience, mostly all at this agency. But she's not a "clinical social worker". So The Powers That Be in the bureaucracy that governs Medicare forced her to have to tell sixty clients (yes, 60) that she could no longer provide services for them. And since there were not a lot of social worker therapists at the community mental health center to take on these clients, most of them just got pushed out into the world without treatment.

The reason I did not get pushed out into the world then was because my therapist decided that she had two clients who absolutely had to be seen, and one of them was me. I never really knew the details of that. I only knew that after she told me there would be no coverage for me to see her, she also told me, she was going to keep seeing me anyway. And she did. I don't know what she had to deal with behind closed doors to make that happen, but I know she really pulled some strings. I appreciated that more than I can express. I am not sure I ever expressed my appreciation to her as much as I could have. I need to work on that. This therapist kept me going when I was psychotic and terrified. She encouraged me, and never was the least bit condescending. She searched for answers with me and for me, telling me about dozens of books, giving me research articles to read, keeping up to date on details about all sorts of health issues - both physical and psychiatric. She provided a comprehensive type of therapy that was exactly what I needed. I needed someone who I could ask about things, and who I could trust enough to hand my life into her hands. And she was that person for me.

Every few months my case manager has to fill out these reports about me, and she has to ask me "who are the important people in your life right now?". I say my immediate family, my close friend Kathy, and another friend or two, and my therapist, and my case manager. The Powers That Be have succeeded in shrinking my list of important people. They have taken away a support that I needed which really worked well for me. I am not happy about this. I wish I knew who to blame, but, really, I don't. It's the system that is a problem, not just some individuals. It is the way that our society as a whole views mental health and, not only that, but health in general. Our priorities are so deformed, it's sad. Money for war, but cuts in Medicare. I am sad for this nation quite frequently. I have hope for the future healthcare plan that Congress is putting into motion, but I really have been disappointed by the total lack of focus on single payer healthcare by the Obama administration and the congress. But, I digress.

Today was an end, in some ways. I don't think that the importance of this has really hit me yet. Honestly, I had this whole plan in my mind that I would eventually write a book with my therapist, with coping tips on Schizophrenia and Schizoaffective Disorder. But I'm not sure she would have any remote interest in that. And now, I won't be seeing her to discuss things anymore.

The community mental health center hired a new therapist that is a social worker, who I can see now. I could begin therapy with her soon. I'm not sure I'm going to do that, however. Starting all over with explaining my entire life history is not something I feel would be a productive usage of my time and the new therapist is not somebody I would be able to trust for a long time, because I would have to get to know her quite well before I could really feel safe enough to divulge some of my issues. Alas, I'll have to mull this over and figure it out.

Endings and beginnings.....

A long time ago, I wrote here about at a guy I would refer to rather sarcastically as "Mister Wonderful". I haven't had any contact with him in over a year and a half, but I still think of him frequently, because that is part of my pattern with obsessive thoughts - some of them never go away. For those of you who were not readers back then, basically I made an utter fool of myself falling all over a guy who didn't really care about me in the least. It was quite pathetic, and the fact I still think about him is even more pathetic to me. But the obsessive thoughts really suck, and they are not something I choose to have. They just are. Anyway, when my close person with the alcohol problem previously mentioned was in trouble, like legal trouble, I contacted Mr. Wonderful for the first time in over a year and a half. He never wrote back. I only wrote about two sentences. My reason for contacting him was because he had similar experiences as the person I'm close to who got into trouble, and he used to work for an agency that I thought might be able to give some ideas about resources to help someone in the situation I described earlier.

The thing that is important here is not that the guy formerly called Mr. Wonderful never wrote back. The thing that is important is that I actually thought he would. Man. Talk about feeling pathetic.

My symptoms have been acting up lately, maybe that is the explanation for why I had this delusional idea of Mr. Wonderful actually giving a damn about the person who used to frequently annoy him who (as has been clearly established), never cared for a at all - would, for some cosmic reason of true love and attachment, contact that person. I hate that this has been a part of my life for 13 years. I HATE THAT THIS HAS BEEN A PART OF MY LIFE. I TRULY DO. Really. I hate it. I've worked quite a bit on changing it, but the thoughts come back.

I would like the thoughts to end forever. They may never do that. But what did end the other day, when the former Mr. Wonderful did not acknowledge my existence, was my sad little belief that he would, under certain circumstances, talk to me again.

Why these thoughts never leave for good, I do not know. I do know that I have other thoughts that are obsessive, but none as strongly as the one about this guy.

It's okay though. I'm okay with this now. I'm okay with knowing that I have these odd thoughts, which get in the way of things by toying with my emotions, yet, knowing that they are only that - thoughts. I know that I don't really care about this guy anymore. And so, I can go on. The thoughts float in and out of my head, but I can go on and live with them.

I think that fact right there sums up what I learned in therapy over the past three years. I learned that perceptual problems (as my therapist called them), can come into my brain, stay there a little while, then leave. And I can still go on. I don't have to die, or end up in a hospital, or give up all hope and feel that all is lost. I can just let it be, and go on. What a gift, that knowledge is. A true gift. I will be grateful for my therapist forever for that.

Friday, April 02, 2010

sixteen years of chronic illness

The first time I had chest pains, I think I was fourteen years old. I remember that I ended up seeing a pediatric cardiologist, who did some kind of tests (I guess), and then told my mother that although I was definitely feeling real pains, he did not know the cause. My mother got mad, as was her usual reaction to things, and blamed me for supposedly making up the pains. I never made up any pain in my life. I did learn to keep my mouth shut about real pain, though.

I got sick when I was nineteen years old. That was 16 years ago. I was working at a library, and I will never forget how the pain began. I first had a horrible headache, which I attributed to sinus congestion. I was taking Ibuprofen and cold medicine, but I would end up bent over the steering wheel of my car in agony, because my head hurt so badly. Then the pain spread, out into my legs, my back, my arms, my entire body. I hurt, literally, all over. I remember lying on the couch wondering if I had gotten some kind of cancer that spread to the bone, or if I was dying of some other disease, because I was so very tired, unreasonably tired, and was in intense pain. I had to quit my job at the library. I kept my other job, which was at a telephone call center, but went for months without working at all.

I started seeing doctors frequently, trying to find out what the problem was that was causing all these weird symptoms. I had strange symptoms, like a weird rash on my leg that wouldn't go away, and that a doctor told me was a definite sign that I had an immune system problem. I had stomach problems, so I got diagnosed with Irritable Bowel Syndrome. And the pain was attributed to Fibromyalgia, which was, back then a catch-all diagnosis given primarily to women whose symptoms were not easy to diagnose. It meant that I was also being viewed as someone whose pain was all in her head. I was given antidepressants and told to take it easy.

I would never have believed, back then, if you told me that I would still be dealing with physical illness, and still getting tests, and yet, not killing myself, sixteen years later. I really thought I would have to get better, or die, eventually. The facts of chronic illness are not part of our public dialogue. People assume that an illness is, just that, an illness. Not a permanent fact of life. But the most common disability in the United States today is actually chronic illness. Chronic illnesses are not recognized as real problems in emergency rooms, like acute conditions are. So I would end up in emergency rooms, being told that there was nothing wrong with me other than my mind, and that there was no reason I should feel like I was going to faint every time I was on my feet for five minutes. I found out, through reading, that I had all the signs of Chronic Fatigue Immune Dysfunction Syndrome, and also, of Neurally Mediated Hypotension, also called Chronic Orthostatic Hypotension. In 1999, I saw a doctor in Washington D.C. (I was living in Baltimore then) who diagnosed me with these problems, as she was a specialist in that area. I was 24 then.

At 24, I also became psychotic, so keeping up with all those medical tests and appointments wasn't something I was able to continue doing the way I would have if I had no mental health issues. I did get told by an eye doctor that I had Sjogren's Syndrome, at 24, because my eyes were so horribly dry, they burned and felt like there was sand in them, and my vision was suddenly poor. Today, I am still being treated for Sjogren's Syndrome.

Today, I am thirty-five. I have been physically sick for sixteen years. I have been told that it is "probably Lupus", "Rheumatoid Arthritis", "Mixed Connective Tissue Disease with Fibromyalgia and Sjogren's Syndrome", "Orthostatic Hypotension" and Peripheral Neuropathy, some sort of autoimmune diseases or some combination therein. I have had abnormal bloodwork that showed I have an autoimmune disease. I have had horrible fatigue and spells of falling down because I was near fainting. I have been through many, many, many medical tests. I have been quite sure, at times, that I knew the problem was a form of dysautonomia, such as Chronic Orthostatic Intolerance or Postural Orthostatic Tachycardia Syndrome (another thing I had all the symptoms of, which is related to Chronic Fatigue Syndrome and Fibromyalgia and autoimmune diseases). I have had test results that showed orthostatic hypotension, arthritis of the cervical spine, a vestibular disorder, Endometriosis, inflammation of the stomach, and other issues. I have seen neurologists, gastroenterologists, rheumatologists, opthamologists, endocrinologists, psychiatrists (obivously), dermatologists, gynecologists, ear-nose-and-throat doctors (whatever "ist" that is), an interventional radiologist (who offered to do surgery), dental clinics (dry mouth from Sjogren's causes severe dental decay) and, most recently, a cardiologist.

To say that I got tired a long time ago of going to doctors and getting medical tests done would be an extreme understatement of the pathetically obvious.

I have gone through periods of denial, too. Most recently, that was the past two years. I decided I was healthy now. I decided that I didn't really have the orthostatic hypotension, anymore, and so I went off the medications I took for years to treat it. I noticed no major differences after going off the meds, which further influenced my thoughts that "I'm better now". I also kind of figured that the universe would only hand out so many health issues per person, and I had surpassed the limit, so I should be okay in the future. I figured Schizoaffective Disorder or Schizophnrenia was as much as I could handle, and so I chose to believe it was the only problem I had.

I was wrong. I deceived myself.

Today, I have all those signs of dysautonomia, just like I did ten years ago. A few years back, some friends and I created an online support group for women and girls with chronic illnesses and other disabilities, called Sick Chicks and Twisted Sisters, and in 2002 I created the website at http://sickchicks.homestead.com. I later abandoned that website, as did my friends, and decided to try and put the whole illness thing behind me, if possible. It turned out not to be possible.

I'm tired. I have chest pains. I'm wearing a heart monitor right now for two weeks. This is pointless, since, most likely, nothing will show up on the heart monitor. I have no faith in Western medicine anymore, most of the time, so I no longer get interested in whether or not some stupid test shows what is wrong. Most of the time, they don't. I have really started to lose hope lately, when the fact that I am not physically well has been so blatantly obvoius, particularly a couple of weeks ago when I was rushed to a hospital in an ambulance, barely conscious, from a restaurant where NOW was having a meeting. When you're losing consciousness, it's hard to pretend you're fine in order to let other people have the ease of not knowing you're not fine.

So, I'm not fine. Too bad if others in my family or people who don't know much about these illnesses do not believe or do not care to know about any of this. It is the reality of my life. It is not my only reality. I can still have hope and still be happy, and still be a regular human being. But I'm back at the point where my health is greatly influencing my ability to function on a daily basis, my ability to go to college classes, my ability to work, everything. And that is really damn depressing and discouraging. I am trying not to lose hope.

There are videos on POTS and related illnesses on Youtube. Here is the link to one. This may or may not be the crux of my problems. I may never really know for sure. I do believe it is, based on my sixteen years of experience, but then, I'm not an M.D. Like a woman who spoke at the recent Florida Consumer Conference NAMI held here, my only qualifications behind my name are I.T.E. or, "I'm The Evidence". With these qualifications, I can state that Postural Orthostatic Tachycardia Syndrome, an illness many doctors have no knowledge of because, like many illnesses that primarily affect women and are not easy to diagnose, it is not considered all that important by Western medicine. So now you might understand why I don't have much hope for Western medicine helping me.

I broke down and cried in misery today, and some other days lately, because I JUST WANT TO BE ABLE TO LIVE MY LIFE. I do not enjoy being sick. I do not get any benefits from being sick. I don't know a lot of people who even know that I am sick, because it is not something I ordinarily advertise about myself, and because, I don't "look sick" (whatever the hell that means). A lot of people who didn't look stupid have looked at me and assumed I didn't look sick, but many people do not realize how many illnesses there are that one cannot necessarily see by looking at a person, even when they are seriously debilitating. I just want to finish college, keep my job, and be able to do a few enjoyable activities. That is all. I want to be able to exercise so I can lose more weight, but right now, I cannot do that. I will not, under any circumstances, agree to go back to being bedbound like I did for a few years in the past. I will not put up with that, which is why I am going to doctors (still) and getting (still more) tests done.

When I walked into the cardiologist a couple weeks ago, they hooked me up immediately to a heart monitor because my pulse was 136, for now apparent reason, while I was sitting in the chair there. There is definitely something wrong with my body. I just need the damned proof of what it is to get it effectively treated. I wish it was "all in my head", since my choice would have been to get rid of it a long time ago, and if it was all in my imagination, I certainly could have done that. Unfortunately, it isn't. And I don't want to be part of that statistic that says people with illnesses such as Schizophrenia die 25 years early because when they get sick, they do not get good medical care. I am not going to agree to die young because somebody can't figure what the hell is wrong with my body. I want some damn answers. That is all.