Wednesday, March 31, 2010

Sunny skies and happy thoughts

I was thinking about how my recent posts have been full of some complaints. Honestly, I didn't feel like I was complaining at the time, just stating some basic facts of my life. But, I don't like to give off the impression that I feel sorry for myself or dwell in negativity rather than possibility and all of that. So here is a happier note, for you, the friendly reader. Hopefully, you're not one of those people who believes one's thoughts create the future of one's life in every possible way, because I can't imagine anyone who believes that would actually be interested in my writing much, for one thing, and for another, if you do think that way, I feel sorry for you. I know, thoughts definitely contribute to the creation of situations, but I don't buy into too much of The Secret kind of hoopla, and am not really aiming to sound like I do.

OK, now that we've got that straight. My wonderful friend, who shall be called Wildflowyr, because that is sort of her name, makes my day sometimes by sending me little cards and notes with stickers and flowers on them. They are always cheery - but not in a phony way at all - and also always meaningful gifts from a person who has been a true friend to me for more years now than anybody else I know, and who I trust implicitly because she is an understanding, kind, and very wise soul. I know I mentioned some old friends who skipped out of my life a few years ago, but those are not the only friends I've had, and I didn't want to leave the impression that I'm not grateful for those friends who didn't skip out when they noticed certain things about me, such as full-blown psychosis (you know, little things like that!). Really, it takes a lot for someone to remain in communication with a person who is clearly not thinking rationally much of the time, because the person is disabled by mental illness. It takes a very kind and mature person to remain your friend through the very difficult times. I am very appreciative for such friends.

I am also grateful for the friends I have made through writing this blog, as there are two who I have gotten to know and consider to be real friends, regardless of the fact that we have never actually met.

I know some people who are sort of friends, too, from the organizations I work with as a volunteer, and those people are great to know as well. I think people in general have things to teach others about the world and their lives, and experiences, so it is helpful to surround yourself with different folks from various walks of life, in some manner. I mostly do that online, I guess, but in some cases it's in person too.

Along these lines of thinking positively (however overused that term is and however much it annoys me), I am also full of hope for the future, most of the time. I do not have answers about my health problems, or how they will affect me in the future. I do have hope. Answers are not the only thing you need to get by in life, obviously. One can live without them, if necessary. So there's a happy thought to promote in the universe!

(Now I will win the lottery).

Sunday, March 28, 2010

I have been her kind.....(on disclosure and loneliness)

Since I was seventeen and first read her work, every so often a line from Anne Sexton's writing comes into my head. Right now, as in many instances, it is:

This loneliness is just an exile from God.


Mind you, I don't particularly believe in God, and the quote is rather melodramatic. But I like that quote. Something in those words captures the ache of too much solitude and disconnection from other people. I often wish I was a different type of person: a person who was still thin and attractive, a person without a bunch of health problems, a person without a psychiatric illness, a person who is more outgoing, a person who is more attractive in general to other people, because of whatever qualities there are that make some people so likeable.

It's not really that nobody likes me. I know people I like who also seem to like me. But I don't have a lot of close relationships. I don't have any kind of love life, and haven't for over two years. I don't even think about that much of the time, since with my fatness comes my belief that nobody-will-ever-be-attracted-to-me-because-I-am-obese low sense of self worth. In my twenties, to be honest, I was not bad looking at all. I had a lot of men who were interested in me, and sometimes I was interested in them, but sometimes I was too unstable to know what I was doing too, so it didn't work out for the best. But I had people who would want to date me, and I felt enough confidence, somehow, that I would do that. I wouldn't even try now. Not at all. And it doesn't really matter, because I feel quite sure at this age that I am now that romance is not all it is cut out to be, and that romantic love doesn't really last, most of the time. But sometimes....it would still be nice to not be alone. I suppose this is a normal way for a person to feel in our society which so perpetuates the myth that anybody in a couple is happy and anybody without a partner is not. Sometimes I fall for that myth myself, and I think if I wasn't alone, this wouldn't bother me so much or the burden would be easier or it would be more fun because I would have someone with me a lot more often to enjoy experiences that I enjoy right now by myself. But touche. My therapist said that having a relationship is the "icing on the cake", and you don't really need that icing, even though you would like to have it. I think this is true.

Speaking of my therapist, I really like her. I have trusted her and confided in her, and took copious advice from her (as she is very intelligent and knowledgeable) for the past three years. Some months back, Medicare decided they would no longer pay for her to do therapy because she is a licensed mental health counselor and they only want to pay for licensed social workers at the community mental health center I go to. My therapist fixed this problem for me by some sort of agreement with her boss that I could still come in for therapy ever week. She is that kind of woman, the kind who goes out of her way to help people when she can. I found out a few days ago that, since the community mental health center is hiring a licensed social worker to do therapy, they will no longer let me see my therapist. They would let me see the new one. I am not particularly interested in seeing a new therapist, at all. Somehow I had it in my mind that I would have this therapist I've had for three years for several more years. Somehow it didn't occur to me that things wouldn't work out that way.

It's hard when you lose people who matter to you. My case manager has to do these forms with me every few months, and one of the questions on one of the forms is "who are the important people in your life?", and among my people, honestly, are my therapist and my case manager. My case manager will have to close my case soon, because I have not been hospitalized in the past two years. So she will be gone too.
I don't really talk with her that often anyway, but it's nice to have someone to call when you need some back up in dealing with the doctor or the landlord or whatnot every once in a while. And it's nice to hear some encouraging words from a person who has watched you go from being a hospitalized psychotic person to a person with a reasonably normal life. She always tells me that I am doing remarkably well compared to back then.

A few years ago, I lost some good friends. They disappeared from my life, and in two cases, they did it by telling me point blank they wanted me out of their lives. This was because I was floridly psychotic, but since I did not know I was psychotic and I did know that my friends decided to evacuate my premesis, I was very hurt. They were my closest friends. The third one was really my best friend, and she disappeared without a word. I met all of them on the internet, but two of them were friends who I had met in person too. In one case, my friend helped me get a place to live when I was homeless and I will forever be grateful to her for that, but I will also forever be hurt that she dumped me on the side of the road so-to-speak because my problems with mental health were too difficult for her to understand. They were too difficult for me to understand too, but I didn't have much choice but to live with them since all my suicide attempts seem to have failed. Not to long ago, I came across her name on Facebook, and sent her a message. I told her that in the past few years I had been diagnosed and treated for Schizophrenia, and I am now doing much better and have a happy life. I told her how much I appreciated her friendship and assistance in the past, and I how I had really missed her and thought of her often during the last few years. She wrote back to say that she thought I had been diagnosed with Schizophrenia five years ago (to my recollection, I never was), and indicated that she didn't believe I had really changed at all. We never communicated again. I really have nothing to say to her anymore, and I know she couldn't care less about talking to me. So be it. People change. People move on. Life goes on.

Still, still, there is this loneliness. I can be in a room crowded full of people and be lonely because I don't know how to talk to them, I don't know how to make them like me, I don't know what it is, that magic quality some folks seem to have that makes them be able to socialize with ease. I've never had that quality. I try to be friends with people, but at some point I can't let them know any more about my life, because I know they would not understand, and I do not want to set myself up to be judged and hurt by anybdoy again. So I keep things to myself, or I write about them here on this blog, but I don't talk about them with many people. Except my therapist, and the woman who is in my therapy "group" (two of us have comprised the group for a couple years), who I won't be seeing anymore since I won't be seeing my therapist anymore after another month or so.

It's kind of hypocritical, I guess, that I believe people with psychiatric illnesses should be able to talk about those illnesses and disclose them to others in their lives, but I myself don't do that with a lot of people, except on the internet. I try, sometimes, but it's so risky. I had a lot of problems at my last job after being hospitalized and having information get out about that, so I never disclosed to anyone at my current job and probably never will. Even though I believe we should, in our society, accept mental illnesses as disabilities just like any other kind of disability, I am not so naive as to believe it is always possible for people to disclose those illnesses. And I guess that's what makes me lonely. Here I sit behind my wall of self-defense, with my secrets. On my side of this wall I hide my mental illness and all of the ways it has impacted my life. I hide my history of homelessness, and all the hospitalizations. I hide the tons of medications, the doctors, the group home, the Assisted Living Facility, the symptoms. I hide the voices and the doublespeak, the hallucinations, and the delusions. I hide my past. I hide my present. I hide a lot. Peek-a-boo. It would be nice to take this wall down once in a while. I need to learn how to do that in a way that is safe. I need to find that safety, with someone, at some point, where I can say, "Yes, you really are my friend", and let them know a lot of the things I usually hide. I have one friend in this area who I do that with, because she knows me from a mental health facility where we lived together years ago. But one person who really knows you in the town where you live is not really enough. I need to find some more people, and gain some more confidence.

Wednesday, March 24, 2010

sickness.

Being sick sucks. Particularly when you are so ill that you feel barely able to function in the world, yet your illness does not show up on any routine tests, since it is not a routine illness that the universe bestowed upon you. Nothing is more insulting than having a condescending doctor imply that you cannot really be feeling as bad as you feel since your bloodwork doesn't have an indication of it. Most chronic diseases do not show up most of the time in bloodwork. That is a fact. The most common disability in the United States is chronic illness - another fact. Many chronic illnesses - specifically nearly all the autoimmune diseases, of the type I have, occur far more often in women than in men. Most doctors are men. Most men are sexist. The world of Western medicine is disturbed by patriarchy just like every other aspect of our society, and is not, historically, as helpful to women as it is to men.

Incidentally, the number one killer of women is heart disease. Only in the past couple of years have I heard that statistic on television. Many people still seem to believe that breast cancer is more common than heart disease in women, when, actually, the opposite is true. Further, autoimmune diseases are far more common than breast cancer. One might wonder why, if this is the case, is there not more funding into research of all the autoimmune diseases. Good question to ponder when you have the time.

ALSO, for the person who criticized me in another post's comments, I would like to let you know, I don't accept your criticism. I will not apologize that being sick makes me angry, that I don't enjoy being sick, that I hate wasting my life away in doctors' offices, that sixteen years of incurable chronic illness is really ENOUGH for me, and I am not exactly welcoming more sickness to enter into my life. I don't feel apologetic about that in the least, and I don't really give a damn if anyone thinks this is a "negative" way to talk in one's blog. It's the truth. I have no patience for bullshit. I like the truth. And the truth is, I hate being sick with every cell in my being. Dislike me if you want. That's your perogative.

Yesterday I saw a cardiologist who said one possibility of my recent chest pain and palpitations that occur quite frequently (thought not an explanation of other problems that are occurring), is that the Phentermine might have caused problems. Another possibility is that my heart has some problems on its own. Either way, I have to get a bunch of cardiac tests done now, and I have already, many years ago, undergone a zillion medical tests and certainly enough to last me a lifetime. I don't relish having to go through more of that nonsense. I have far better things to do with my time than that. But that is what I'll be doing.

And if Phentermine caused some damage, that is truly ironic, because I am only on Phentermine to combat the huge weight gain that I got from a medication I have to take because I am mentally ill on top of being physically ill. That is really cute. Of course, if Phentermine is the only problem causing all these symptoms, I will be quite happy as that would mean no actual heart disease (unless it caused heart disease). But I am wary of believing simplistic explanations like that for complex problems. My experience has been that I don't get a load of luck when it comes to health issues.

I am grateful for the health I do have, don't get me wrong. I am grateful for a lot of things. But once in a while a woman has to vent to somebody somewhere.

That said, I also saw a documentary Friday that was called Shooting Beauty, about severely physically disabled people, and it was amazingly beautiful. It was at the Gasparilla Film Festival in Tampa, and there were only about ten people watching that particular film, which won't be shown anywhere near you, most likely, ever, but if it is, you should check it out. Unfortunately, after that outing, I had to spend two days barely doing anything but sleep as my body was completely wiped out by everything. Such is life sometime.

Wednesday, March 17, 2010

advocacy work




Recently, I had an opportunity to attend a NAMI (National Alliance on Mental Illness) conference for mental health consumers (consumers is the term used rather than calling people "mentally ill"), with a group of people from our local Consumer Council, of which I am the acting secretary. There were six of us; we all received scholarships to go, either from NAMI or from a state government agency. The scenery was idyllic, and I took a number of pictures. The scholarships were all-inclusive, paying for the rooms and the food, which is something I am really grateful for, as I wouldn't have been able to go without that assistance.

There were a number of speakers from the Department of Children and Families, Value Options (an HMO in Florida), the government's Substance Abuse and Mental Health Services Administration (SAMHSA), and other places. My favorite workshop was on the topic of "social inclusion". You don't hear those words very often in every day conversation, but the term is something we all need to think about more often. I was happy that the speaker, who works for a Florida agency, was also a consumer himself, as were most of the other speakers too. In this particular workshop, he made the point that people with psychiatric disabilities are the last group in our society which people feel that they can discriminate against without consequences. The civil rights movement changed things for African Americans (to some degree, though I know not enough), the women's movement has conquered some of the barriers women face (though not enough yet, and it's not over), many organizations demand equality for the Lesbian, Gay, Bisexual, and Transgender community. But who is fighting for equality for people with mental illnesses? We are. There is a need for more of us, and it's a big need.

The speaker discussed, as well, the terms we use to describe people who have mental illnesses. He said what I have thought for years. He said he is not just "mentally ill" with a sickness that comes and then goes. He is disabled, by a condition that is permanent, but which does not keep him in a hospital or at home in bed all day. He said he aligns himself with the disability rights community (hello! I did that because I had a physical disability before I knew there even was a mental one, so I am really familiar with disability advocacy, and to me, that includes psychiatric conditions), because he has a "psychiatric disability". I have liked that term best for a long time, for the same reasons. I'm not able to work full time, both for psychiatric and physical disability reasons. I don't tell that to a lot of people, because I don't primarily define myself that way all the time, and because people are very judgemental creatures most of the time.

But I like that term. I think it's an accurate term. And I think there is a very big need for more mental health advocacy, and more awareness and education on mental health issues, and more research, and, obviously, more funding for treatment. Florida is considering a $98 million budget cut right now which would have extremely detrimental effects on those of us who need services. There will be fewer beds, longer waiting lists, more people not getting their medication at all, more people on the streets, more people in jail, people who need help. Is anyone in Tallahassee listening to us? I'm not so sure the legislators are. I know that people in the Department of Children and Families care about their budget being cut, and that organization sponsored this conference I just went to. But the people whose votes matter, the people in whose hands are other people's lives, the ones who make the decisions on the laws that govern our healthcare and lack thereof, well, I really don't think they listen much at all. But perhaps I'm just not in an optimistic mood.

Tuesday, March 09, 2010

I guess I forgot the "cautiously" part of being optimistic.

Just when I thought happiness, physical and mental health, concentration, and finishing my degree were attainable all at once.....the universe knocked me out. Almost literally, but not quite.

I was headed to a NOW meeting Sunday at a restaurant. I'd noticed that my hands were shaking that morning, but just chalked it up to a reaction to one of my numerous medications. Let me define numerous, just for the record, and because it helps if I can look back on these things later: I'm on Wellbutrin 450 mgs, Synthroid, Cytomel (those are thyroid meds), Phentermine 60+ mgs (for weight loss), Anafranil 100 mgs )(antidepressant for obsessive thoughts), Seroquel 1,000 mgs (antipsychotic), some muscle relaxer I can't remember the name of because it's not too important (Methocarb something), Klonopin (1 mg, because I've been on it forever and it's hard to get off, though I do want to be rid of it), and the lovely biweekly injection of Risperdal Consta, 50 mgs (antipsychotic that actually works for me).

So, I figure, a little hand shakiness is just a reaction to one of these meds, or something else unimportant. Then, while I'm driving, my feet feel like jelly and the gas pedal feels like I'm not touching it. I am going numb in my hands and feet. I think there's something wrong with my blood sugar, and I need to eat something. I get to the restaurant and tell this to a couple of the women there for the meeting. One is, luckily for me, a nurse. She takes my pulse and says it's high. I try to act like I'm not feeling incredibly and rapidly ill, but I can't hide it for long because I can't stand up, and can barely sit up, and then I can't feel my face, or my hands, or my feet - they're all numb. Then, I can't keep my eyes open. By this point the nurse already had me drink some orange juice with extra sugar, to see if that helped. It doesn't seem to help. Next thing I know, I can barely talk, and am having a hard time catching my breath. That's when I say, "I think I need to go to a hospital". I can't get in touch with my mom or my sister to have them pick me up. The nurse is now hollering at the restaurant manager, "You need to call 911 for this girl fast!"

After that comes the gurney and the trip which I don't see much of since, for some odd reason, it's hard to hold my eyes open as they are twitching uncontrollably. I am so weak that, when the paramedics try to take my blood pressure or put a thermometer in my mouth, I can't hold my arm up or get my mouth around the thermometer. Things are getting a little scary.

Then I'm at the ER, and then there's tests done, like an EKG and a brain scan, and then, of course, because this is the story of my life, the doctor tells me nothing abnormal is showing up on the tests.

At one point, after giving the entire list of all my medications to yet another person, I start crying because I know, I know, I know, they're just going to tell me they don't know what's wrong and maybe it's a psychiatric problem. I know I'm physically really sick and something is really wrong, but I know, because I've lived this sort of thing (though not this abruptly severe) before. And you don't forget that kind of crap. You don't forget how insulting and frustrating it is to know that you are really ill and have some doctor tell you that you have no abnormal test results.

Hence, I am wary of talking to these people at all. I do not have any faith in their ability to help me with this situation. I am well aware that I'm basically on my own with this, because the emergency room isn't set up to help people with chronic diseases that are not considered emergencies, and I know a lot about that from some heinous past experiences that I thought I had put behind me long ago.

I also know that they're going to be looking at the records from when I was here before, and when I was at this hospital last is the day five years ago, that I was taken in handcuffs to a psychiatric ward at a different hospital after six police cars arrived thinking I had a gun in my hand (I didn't, but there was one in the trunk and I was intending to shoot myself with it later, so it's kind of good that the police arrived). I had forgotten that all that history was going to be dredged up if I entered this hospital. Of course, it probably is.

Basically I'm now back to square one. Time to worry about my health again. I'm back to where I was a few years ago. I'm unofficially diagnosed with Sjogren's Syndrome, although it failed to show up on the lip biopsy I had done last year,and officially diagnosed with Mixed Connective Tissue Disease, since my doctor, a kind rheumatologist, knows that I'm not some "crazy" person making up psychosomatic complaints, and she takes me seriously. She still thinks that I might have Lupus, but I don't spend a lot of time thinking about that, since, normally now, I can manage to get through my days with relative ease. Not anymore. Since this episode Sunday, I'm totally exhausted and feel like I felt ten years ago, when I was diagnosed with dysautonomia (orthostatic hypotension). That was not an enjoyable period in my life. I was basically bed-bound for the greater part of three years. I don't exactly want to go back to that.

The doctor at the ER, before sending me home, did say that she knew there was something wrong, and she just didn't see anything on the tests, but I should follow up right away with a doctor and probably see a cardiologist. So, I'm doing that. I'll see if that cardiologist knows anything at all about dysautonomia, which is the most likely cause of my current predicament, and if she has any other ideas on what the problem could be.

But that's next week.

Right now, I just want to get through this week, as I'm going to a NAMI consumer conference a few hours away, with a group of people. We all got scholarships to go, and I think it will be interesting and fun, or at least, I thought it would be, back before I started to feel like this.

After a couple of hours in the ER, I could walk and talk, and probably chew gum at the same time. So I'm not in that horribly weak position right now. However, I definitely don't feel up to par. I don't feel half as well as I felt four days ago. I'm really hoping this is not a long-term situation, because I don't feel like I have the mental stamina to go through that illness/stillness hell again. I need to work, and I need to complete my degree, and I just do not have time for a sickness to take over my life. Damn it.

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