Friday, October 09, 2015

Darkness Visible

I still have no computer, but since things are difficult, I am on my phone to write here again. I texted my therapist this morning, asking if there was any way she could talk to the psychiatrist, to explain my current condition, since he clearly does not understand what is going on. Let's be real, the psychiatrist is a good doctor with a good reputation, but he seems to forget crucial facts of my life. He once stated something about me living with my mother, last year, when I have not lived with my mother at all in the past eleven years. And when I said "I am terribly depressed", yesterday, he did not seem to understand he was speaking with a person who was first diagnosed with Major Depression 25 years ago. I told the therapist "I am trying to stay out of the damn hospital". She called me, but I knew there was nothing she could do. So I had already called the office and informed the medical assistant that I needed the doctor to increase my Effexxor because I am barely functioning, and I do not want to end up in the hospital.

To be honest with you, I am getting the impression that my doctor actually knows very little about me. I see a therapist in his very practice, and he does not appear to read any of her notes! I know he works at two hospitals, but to tell me "Have a good holiday" yesterday, after I stated a minute before that "I have barely gotten out of bed for six weeks" is pretty nuts! Is he talking about Christmas? Thanksgiving? I do not even know how to get through the next 24 hours of my life.

I guess the assistant called him right away, and an hour later while I was in the pharmacy, she called me back and said he was increasing my Effexxor like I asked him to, this morning.

I am getting the feeling that if I am not psychotic, I am no longer going to be taken seriously. The first thing he said when I told him things were bad was, "How are the voices?"

As soon as I reported my antipsychotic is working and there have only been two auditory hallucinations, he seemed relieved. As if that is the only thing that matters. I know that psychosis is considered more serious than depression. I also know that for me, the two frequently occur at the same time. So one occuring is a legitimate problem. The fact that I am completely freaking out and hiding inside my apartment as I write this, because I am terrified of the world, is a legitimate problem. It may not be as bad as voices that told me to drive a car off a bridge, but it still makes me want to kill myself; therefore, it is still bad.

Today, because I cannot think clearly, I went to three different government buildings, just to pay a traffic ticket. The third one was the right place. I found my vehicle registration in my purse, where I must have stuck it somewhere in the past couple weeks when it arrived in the mail, after I renewed it following getting a ticket a couple weeks ago, because it actually expired in January. I had already called the place to report that the thing never came in the mail, before finding it today, inside my own purse. This is the mental capacity I am dealing with, whilst trying to finish college despite an inability to read books.

After I paid my ticket, I decided to find the first available place I could go to study, since libraries close at 4, and it was already 3:00. I saw a Wendy's and went in there. Oddly, the girl working there had a red ponytail and was dressed up as Wendy. For a second, I thought I was hallucinating, but it was a real person dressed up as Wendy. She told me she does this on Fridays, and people say "Where did Wendy come from?" when they see her. She said, "I'm like, Wendy came from the streets!" She had bad teeth, and I felt sorry for her because I know what it is like to have nothing.

I sat at a table with a Diet Pepsi and put down books and papers, but then I disappeared. I felt myself evaporate. It is like the Wicked Witch in The Wizard of Oz, "I'm melting!" I think. This happens every day now. I could not even open the book. I stared at it. I could not breathe, but when this happens I also think apathetically that it does not even matter anymore if I can breathe. My head hurt. There was a TV on the wall, and the sound was killing me. I felt myself overflow with the familiar dread. There would be no studying there. "I HAVE TO GET OUT OF HERE!!" ran through my head. I fled to the bathroom and formulated a plan to gather my stuff and get away from the horrifying bright lights in the Wendy's that were incapacitating me. I rushed as quickly as possible to the car, squinting in the awful daylight and talking to myself out loud, not caring who saw me. "You are getting out now. You are leaving. You are going home. You are going to be OK. The horrific lights are not there at home. It is only ten minutes away. You are almost there. Look at the road. Concentrate. What road is this? This might be Keene. You are almost home. The cats are there. You can sit in the darkness with them on the couch. You will be able to study there."

I am home now. I cannot find one of my textbooks. It is rather important, considering there is a midterm next week, and I have read none of it. I have no idea where it is, nor am I able to read anything in the other book.

I keep telling myself after working 22 years to get through college, I cannot give up.

Parts Unbound (a book with an essay I wrote)

As my recent posts have been downers, I wanted to mention something positive.

For the second time, I have been published in a book.

My essay, "Choosing to Live", appears in an anthology by persons living with mental illnesses called Parts Unbound: Narratives on Mental Illness and Health, published by Limehawk Literary Arts Collective in NYC. The book is being released tomorrow, December 10th, on World Mental Health Day.

I am honored to appear in this book and excited about it. It will be the second time in my entire life that I have made any money (a very small amount, but any money is still money and it will fill my gas tank) from writing.

I submitted this essay a couple years ago, both to Limehawk and to a journal which rejected it. That was my first rejection letter. I never submitted anything since, mostly because I have not spent the time working on my writing enough to do it. My goal in life has always been, secretly, to write and be published. The one book I did write, with Jessica Leach, Episodes of Schizophrenia, is a graphic novel. But what I really want, and need, to do is write a full length book. This is what I want to do, badly, after finally, finally finishing college. This is my dream. I need to make it a reality. I hope somehow I can. At the very least, I want to write more articles and submit them.

If you are interested in Parts Unbound, it can be purchased now, from Limehawk here.

Losing faith in my psychiatrist

I am afraid I have lost faith in my psychiatrist. I went to see him yesterday, assuming he remembered that I walked in there with no appointment a month ago, because my depression was so bad it was an emergency. Now I think he had no memory of that at all. I told him things are not going well, and I am terribly depressed. His response was, "Why would you feel depressed when you are doing so well?" Well? Are you serious? I have barely managed to avoid killing myself the past two months. Maybe he should try taking five minutes a month to ask my therapist, who works in his office, how "well" I am doing! I mean, what planet is this where I am doing well? I am barely managing to function at all! If he didn't have 10,000 patients, and spent more than five minutes with me, perhaps he would understand who I am a little better than this.

It is my own fault. I should have just written down a list of symptoms and let him come to his own conclusions. But really, things are not going "well" here at all. My response to "why are you depressed?" was "I don't know. Serotonin?" I mean, he is a psychiatrist. Is this not the reason I see him?

It is my own fault. When he suggested increasing my Effexor, I stupidly said how I had looked up the dosages and I was already on the normal dosage for depression (as usual, now, I was not thinking clearly enough to realize I desperately need the damn Effexor increased). So then he started asking me inane questions like "what is your level of education?" as if he has never met me before. I went in there last month to state "this is my last semester in college and I cannot think or read", but he does not even remember that?!

So I said the same thing as last month. "I am in my last semester of my bachelor's degree, and that is why I need my brain to work, because I cannot think!"

His response was to want to give me more Adderal. Why? I have no idea. As usual, I could not formulate my thoughts well, so I could not ask this obvious goddamn question. I just walked out of there with a useless prescription I do not even want! It was a complete waste of an appointment I waited a month for. Maybe if I had mentioned how I was spending much of my time wishing I was dead, how I barely manage to take a shower and sometimes do not bother, how all my housework has gone undone for two months and my apartment looks like a dump, how I have zero energy and for whatever physical reason cannot exercise which makes me even more fucking depressed, how I have a headache every waking minute of the day, how I cannot sleep again, and how worthless my whole life seems right now, it would have seemed more clear that there is depression. Also being chronically sick for half your life is really goddamn depressing in itself. What exactly is going "well" here??

He has no clue at all about my life.

Now I have no idea what to do.

My brain is in the hands of somebody who thinks "the reason you are depressed is because you are having trouble with school". Um, no. The reason I am having trouble with school is my pathetic brain. I want to see some empirical data on how Adderal is going to help me with that. At the very least, I want to know why I am supposed to take this drug in the first place! It would have helped matters if I could think well enough to ask that pertinent question.

Now I am supposed to wait two months for another appointment! Right. Two more months like this? I'm lucky to not be psychotic right now, but that does not mean this is an acceptable state of affairs.

I do not know what to do anymore.

I am writing this on my phone, so it will be a short post.

Sunday, October 04, 2015

frustration from cognitive impairment

Cognitive impairment is ruining my life.

I literally cannot read my textbooks. At all. This may sound like an exaggeration, but I am not exaggerating. I have been staring at this same book that I stared at last week, and none of it computes at all. It makes no sense. It doesn't register. Nothing goes into my brain and gets processed. I do not understand what I am looking at.

Frequently, lately, I have asked the world, "what is going on here?". That is the only thing that comes to mind to ask. I have no idea what is going on sometimes. What are we doing in class? What am I looking at in the pharmacy? What is going on at the intersection? Where am I going? What am I doing?

I have a horrible headache. The noise in this library was giving me a complete anxiety attack, and I immediately searched for the headphones. Luckily, there was a pair in my pocket and another pair in my purse, because I knew I'd need headphones. I downloaded Spotify on the library's computer to listen to music, because I told myself that I would be able to stay in this library, around these people, with all this noise, and somehow study, if there was music.

It is not working.

The music is playing. My brain is not working.

The lights are extremely bothersome. I cannot stand the bright lights in here. I hate bright lights. They give me a horrible headache.

I know this sounds like a litany of petty complaints.

I don't know how I am going to finish college like this. It seems entirely ludicrous. I cannot read. I haven't read anything in either one of my political science books. I don't know how I am going to manage to pass the exams.

This is a really horrible situation to be in. I hate this. All of these medications, and they cannot get my brain to work efficiently. Why? What is the problem? I fail to understand why my life has to be such a disaster.

I will write something better another time, when I have something better to say. Cognitive problems are extremely frustrating, and my arms are killing me, which is not helpful when you are trying to use a computer or read a book, so I am kind of not in a good mood.

I apologize for sounding so negative.

A few months ago, I thought I might go to graduate school. Now I cannot even manage to get through undergrad classes, and this is very upsetting to me.

Friday, October 02, 2015

Chronic, Physical Invisible Illnesses (Such as Autoimmune Diseases) and Mental Illness Co-Occurring...and how they can affect your life

I am at the Clearwater main public library. It's in a different building now, but it's the very same library where I worked when I was 19, when I became seriously physically ill. And it is serious, physical problems that I came here to write about today. I'm still computerless, so the only way I can blog or write anything much is by going to a library.

When I was 19, I worked here shelving books. I liked books. I liked to read books, even though my concentration was often poor. Then I became so debilitated by fatigue and widespread pain in my body, that I had to quit my job. I'll never forget it. I sat in my car, in the parking lot of this library swallowing over the counter stuff in a pathetic effort to ward off whatever was wrong with me. In vain, I searched through books in bookstores, thinking perhaps I had some cancer and I was dying. I had never been so sick before in my entire life. I did not realize, then, that you can become very ill with things that are not easy to identify on tests. Soon, I would learn the truth. Soon the doctors would start what doctors always do with people (and particularly women) who have vague, invisible illnesses that are not things that you die from as AIDS or cancer or heart disease, but are debilitating to the people nonetheless. I feel badly saying this, because I certainly am not trying to minimize what people go through who have fatal conditions, but very often, over the years, I've actually hoped it would be something that would be identified the way HIV and cancer can be identified, so I would, once and for all, finally know exactly what the hell was wrong. But at 19, the doctors started doing what they do with people like us, and that was to refer me elsewhere for more tests. Over, and over, and over. I have seen so many specialists in my life, I used to sit in the cafeterias of hospitals in my exhausted state, alone (since I've always dealt with all of this alone) and just cry. Because I was so tired of it all. I was tired of tests that always found either nothing, or just some odd things that could not be explained, and therefore were not deemed important.

At 19 or 20 I was diagnosed with Fibromyalgia. This is one of those diagnoses that, in the 1990's was considered "all in your head". As in, you're not really in pain, you just think you are. But I had never been in so much pain before in my life. I didn't even understand that a person could simply be expected to live with pain forever. I was sent to a rheumatologist, who told me to pretend from then on that I was 90 years old. I hated him for saying that to me. I hated the fact that anybody could think this was an acceptable goddamn situation to be as exhausted as I was (and as I am right now) and in pain, and just LIVE with it, because, well, there was nothing much they could do. They put me on antidepressants, of course.

Now, along with the "it's all in your head" diagnoses, which cause frequent discrimination from the primarily male, patriarchal medical profession against women with chronic illnesses who have no mental health diagnoses at all, bear in mind that I already had a mental health diagnosis. I had already had Major Depression and Anorexia diagnosed since I was a teenager, so you can imagine that when I had all sorts of physical complaints, but nothing showed up on the bloodwork, as nothing usually does with certain illnesses, I was not exactly treated with much respect. I learned to despise doctors. Quickly. And I still despise most of the doctors I've ever met, for the way they treated me. I only trust a couple of them now. Those are the primary ones treating me, all of whom have known me for years.The other day, I was sitting in my car, thinking about how I'd rather invite my rheumatologist, Dr. S-M and my psychiatrist, Dr. S. to my college graduation than have my parents there, because it is actually these doctors who were helpful in getting me through school, not either one of my parents who never did anything helpful at all. I trust these doctors, because they treat me with respect. They actually listen to me. They have both known me for years, so I think they realized a long time ago that I know what the hell I'm talking about when it comes to my body. And they don't dismiss it.

Dr. S.-M. has been my doctor now for about 9 years. I should have called her immediately when I began to feel horribly sick a few weeks ago, but I didn't. The reason I didn't is that sometimes it's hard to tell the difference between the psychiatric and the physical, even for me, so I went to my psychiatrist instead. I told him I was horribly depressed. You may have noticed, in the writings here recently, that I have been horribly depressed. However, there is much more to the story than that. My rheumatologist is the doctor who diagnosed me with Lupus, but even now I doubt sometimes whether she was correct. I know she is probably correct, for a zillion reasons, namely all of the symptoms I've been dealing with for 21 years, and for the fact that I've had stuff show up on my bloodwork from time to time that actually does show an autoimmune disease, and for the fact that last year, while I was locked up in the psychiatric hospital for a month, I developed the tell-tale butterfly rash, which is the hallmark sign of Lupus (SLE). I had never had that rash much before, but in the hospital, when we'd go out on "smoke breaks" so people could inhale nicotene, I'd go out into the courtyard with them just to get some "air" (smoke-contaminated air was the only kind available). What I also got was sun, so every time we came back inside, after merely ten minutes, I had a rash on my face. People pointed it out to me before I even noticed it myself. I also got a weird rash on my legs. Of course. being that I was inconveniently located inside the confines of a mental hospital, I could not see my rheumatologist to show her these rashes, and if I had been able to show her, she probably would have known what he hell was going on a lot more than the "medical doctor" I got to see for five seconds inside the psych hospital.

A few days ago, I got into my rheumatologist's office. I had an appointment with her nurse practitioner, who was somebody I'd never met, because the doctor was unavailable for a couple months. I didn't want to see this nurse practitioner, because, like I said, I don't like most doctors. History tends to repeat itself. I lost count years ago of how many times condescending doctors had talked to me as if it was "all in my head" when they were completely wrong. It kind of pisses me off now. A lot. So the first thing I did while waiting for her was write down my symptoms. I didn't intend to waste my time with this person. I intended for her to do something to help. She came in and I said, "Hi, I don't know your name, but I've been seeing Dr. S-M. for many years. Here are my symptoms right now." I read this list: Fatigue (profound and debilitating), weakness, losing sensation in my legs/feet (numbness) - neuropathy worse with frozen face, arms and legs, cognitive impairment MUCH worse, dry eyes worse, dry throat, shakiness, pain in joints worse, knees, in bed most of the time for five weeks, and depression.

She proceeded to try to tell my how my bloodwork from last month didn't show a lot of abnormalities on it, so I cut her right off. I told her my bloodwork never shows a lot of abnormalities, that Dr. S-M. treats me based on the symptoms I've been dealing with for half my life, that I am in my final semester of college and cannot read at all, that I'm having trouble getting to work for a 15-hour a week job because I'm so exhausted, and that I wanted to know what my thyroid levels were. She told me my TSH (thyroid) was a little low. This was not surprising news. She also said that she didn't think I needed my thyroid medication increased. This was clearly dumb. But then, she seemed to come to the realization that she was out of her league, and said, "I think you and I would both feel better if I brought Dr. S.-M. in, since she has known you for so long". Yes, I said, I think you're right.

By the time Dr. S-M. came in, I was so out of it, I didn't notice she was in the room. She said she heard I had some questions. I said, "Well, actually, I think she has some questions for you because she does not know what to do". Hours later, I realized this probably sounded rather rude, but in my state of foggy thinking, all sense of nuance is sometimes lost. I don't have the energy to waste constantly worrying about the appropriate way to say things these days. I keep blurting out things that other people probably think of as inappropriate. During this conversation with Dr. S-M. she laughed when I reminded her that the cardiologist she sent me to last year had "couldn't find anything, so he told me I was fine", even though I had gone there for chest pains. Apparently saying this point-blank sounded funny. It was just a statement of fact, since that's exactly what happened with the cardiologist. When I met him, and I happened to know the name of a "poor man's tilt test", which is a medical slang term used for taking the patient's blood pressure lying down, sitting, and standing up, he said to me, "Oh, you're a professional!" as in, "you're a professional patient, because you like to be sick and go to doctors all of the time." That's only the most insulting thing a doctor can say to a person who's been chronically sick half their life, but I guess it wasn't supposed to offend me.

Anyway, Dr. S.M. seemed to be testing my memory, since I complained that I cannot think, and that it is nearly impossible for me to get through school now. She asked me how much Synthroid I'm taking (that's one of my thyroid pills), and I told her. She asked me how often I'm taking it. "Once". A few minutes later, "And how often are you taking Synthroid?" I couldn't remember. I guess I failed the test. She looked at the nurse practitioner, who was still trying to figure out how to find my medications on the computer, or something, and said, "OK, so here we have chronic pain, new neurological symptoms, fatigue, and cognitive impairment. This justifies a neurological work up". Apparently that idea had not occurred to the nurse practitioner before. I don't know why. This is pretty rudimentary stuff. I have been through all this crap before.

This will be the fourth neurologist I remember seeing in my life. I could be wrong. It could be the fifth one. I'm not sure what I might have forgotten from my 20's. The first one I remember was in Virginia, when I was manic and psychotic, and trying very hard to keep my psychiatric problems under wraps. They did some tests and determined I had a "vestibular disorder" and should wear some stupid patch for motion sickness every day for the rest of my life, even though it did nothing to help. I didn't bother. They did a sleep study and never figured out why I went days without sleeping, because during the sleep study, of course, I fell asleep. The next time I went to a neurologist was when I referred myself to the Mayo Clinic in Jacksonville, and they did a huge work up of tests that involved having to get my mother to drive there with me and stay in a hotel with me overnight, which in and of itself was as nightmare for my brain. That doctor was an incredibly condescending asshole, but he did figure out that I had peripheral neuropathy in my leg, which is the only explanation I've ever been given for why my legs and arms (and now my face) go numb and tingly and lose sensation and feel weird. If you've ever had your foot fall asleep, imagine what that is like if it is both of your legs, and your arms and your face falling asleep, all at once. That is how it feels. I don't know how else to describe it. This is a neurological problem, obviously, which they determined was there with a fun thing called a nerve conduction test that involves shocking your skin repeatedly for hours, to see how your nerves react. I was actually glad that one of their tests came back showing something abnormal, especially considering that the neurologist lectured me on how there was nothing wrong with me at all, while telling me about this test being abnormal and that I needed to take medication for neuropathy (like I said, condescending assholes abound). He suggested that I go to a rheumatologist at the Mayo Clinic to get another complete work-up by THEM, since I was unsatisfied with the way he was dismissing me. I said no thanks. I was done with that place. I was especially done with having to sit with my mother for four hours in a car to get there. So I never went back. I just stuck with Dr. S.-M. ever since. When she refers me to people, I go to see them. Another neurologist I saw was sometime a few years ago, in Clearwater. I have no idea what his name was now, nor do I care, as I quickly realized he was a complete quack. He wanted me to use some cream on my skin that was supposed to fix all manner of neurological problems, and yet the only evidence I knew that this cream did anything was a book he himself had written, which they sold in his office. I didn't bother with him for long. I haven't been to another neurologist since him. I see no point, but I also know that if I have had M.S. this entire time, it would be a helpful thing to find out, and, additionally, I am diagnosed with Lupus, and Lupus can affect the brain. One of my cousins has Lupus in her brain. It causes her to have seizures and all sorts of other problems. I asked Dr. S-M if she thinks Lupus is affecting my brain. She said, "I'm not going to say no, but I don't think so. We just have to have you checked out." Ok. So, at the end of the month, I'm seeing another neurologist. This one is female, so it's a good thing Dr. S-M. recommended her, because male doctors have, historically, always been worse towards me than female ones.

As I was filling out this form I had to send to get an appointment with the neurologist, I had to list all my medications. If you count vitamins and supplements, plus prescriptions, I'm ingesting 22 of them every day. 22 substances, and who knows what the hell any of them are actually doing? Some of them I take four times a day, and I wouldn't be able to keep up with any of this if it weren't for the fact I have a pharmacy prepackage most of them so I don't have to keep track of all the bottles anymore. I've had to revolve my entire life around pills for the past 21 years. I'm not kidding. Literally, the first thing I think about when I wake up and the last thing I do at night, is swallowing pills. It has always been this way. I wish there was a better way, but I don't know of one.

What bothers me the most is the cognitive problems. I can't tell you how many books there have been in my life that I couldn't read. I could never count that high. Many, many books. I was an English major when I was younger, and the main reason I decided to drop it was that I could not read literature, which is kind of necessary to be able to do as an English major. I don't even think about this kind of thing anymore; it is just a fact of life for me. But then there are times when it is worse, and I cannot read any bits at all of a textbook, so it's pretty darn hard to get through college. I know how to bluff my way through by writing good papers, because no matter what is wrong with my brain, I'm usually still able to write papers, but some things cannot be faked, so school gets really hard at times like write now. As I told my doctor, I don't know how I'm supposed to finish school like this. She said she doesn't want me to give up. I don't want to give up either, but it is really hard to function right now. I mean, I literally cannot stand up long enough to do the dishes. I can't physically do it. I have no one to help me with that. So the dishes are simply not getting done. I almost fell over when I was buying food in a cafe at work the other day. This guy asked me if I was okay, because he thought I was passing out. I made up something about having low blood sugar, although actually I don't have low blood sugar. So Dr. S.M. said she was going to give me a shot of B-12 and a steroid that I've had before a bunch of times (when, I don't remember), and put me on a form of prednisone, and she agreed with me that my thyroid medication should be adjusted. I suddenly remembered our conversation a month before, when I was feeling better, and I'd asked her if she would put me on Armour Thyroid. She had said she would if my thyroid levels turned out to be low, and my thyroid levels did turn out to be low. So she is putting me on Armour Thyroid now, probably mostly just to humor me because at this point I'm desperate. She then said, "I'm going to prescribe something else now that will sound a little odd. I want you to watch 60 minutes of comedy per day." She said this would increase my endorphin levels. I didn't have the energy to argue with her about this being pointless so I said I'd do it. Then, I went on Facebook and asked people to recommend comedy videos, since they had been prescribed by my rheumatologist. People recommended a whole bunch of them. I watched a few of them.

Most of the time, I don't talk about being chronically ill with people. Most people who know me do not even know I have Lupus or Sjogren's Syndrome. Most people do not even know what Sjogren's Syndrome is, and are not very familiar with Lupus. I almost never tell people about Fibromyaglia, since it's the least of my problems. But the fact is, that these things, and hypothyroidism are real problems that cause all kinds of symptoms. The fact is that, since I was 19, I've been dealing with doctors and tests and medications all of the time and constantly having to struggle just to get through the day. And the fact is that when you are diagnosed with a serious mental illness like Schizoaffective Disorder, almost no one ever takes your physical health seriously again. The National Institutes of Mental Health found in research that people with Schizophrenia die 25 years early, on average. I attribute this to the physical health of people who are psychotic never being taken seriously, not only because when we're psychotic we're too sick to take care of ourselves, but also because the patriarchal medical establishment minimizes the fact that we are even human beings at all. How can our lives matter much if we're subhuman? And that's how we get treated, like subhuman beings. Once it's in your head, it's ALL in your head. Every thing that ever goes wrong with your body stops mattering if you're considered crazy. All that matters is that you don't matter at all. I have a guy I know through NAMI who has spent the past 15 years or more talking publicly about having Paranoid Schizophrenia, only to find out last year he also has M.S. I'm going to take a wild guess here and say that he probably had M.S. the entire time, but when you waste your life away in the community mental health system, nobody fucking cares if you have M.S. That is what bothers me right now. Nobody cares.

By nobody, I include my entire family. I have one family member who understands that I have actual physical problems, and she's a cousin in Baltimore, who I haven't seen in years, who has Lupus herself (the one with it affecting her brain). Nobody else cares, least of all my mother. My mother is an incredibly self-centered human being. She believes the entire world revolves around her, and that other people only exist in order to make her happy or to make her miserable. That is all other people are for, in her world. So recently, she has been calling me, as usual, because she wants me to cheer her up or do things with her. She calls me for this while I'm lying in bed with no energy at all in severe physical pain that nobody cares about. So do I want to cheer her up? Not really, no. I'm not exactly in the mood for that shit anymore. I have no energy to even converse with her and deal with crap at all. So I don't bother. I just hang up on her. She refuses to even pretend to care how I'm doing, except insofar as it is affiliated with her day and whether or not I'm going to get up and go to the movies with her with no energy to even get into the shower. I do not want to go to the movies with her, ever, but when I have more energy, I do go, quite frequently. I do it because she has no one else in her life who will spend any time with her at all, as she is a completely antisocial human being who has alienated every single human being with whom she has ever had contact. So she relies on me for everything. My brother wouldn't spend time with her unless someone paid him to. My sister moved 1,000 miles away, primarily to get away from her. So she relies on me for everything. And, most of the time, I do what she wants. I go to her damn house, and I hang out with her, and I go to the movies with her. But not now. Now, I can't even take a shower most days, so I'm hardly going to drag myself into my car, drive 20 minutes, and put on a goddamn happy face for this woman who denies the reality of my existence, which is the fact that I've been sick for 21 years with things she believes I make up for my personal enjoyment because I like to feel sorry for myself. That is actually what she has always said. She has always said that I am a hypochondriac. She doesn't care what my rheumatologist or any other doctor has to say about it. She is a registered nurse, but that doesn't matter here either, because she doesn't even know what Lupus is. She just decided when I was 19 that I "made up" being sick, because really, I was just a lazy slob who wanted to lie in bed all day. That is what she always said, and what she still chooses to believe. You see, the reality of me having legitimate health problems doesn't fit into her world view, where the only things that matter are the things that revolve around HER. Since my health problems involve me, and not her, they don't exist. To admit they exist would mean that I am an actual human being whose life actually matters. And she is constitutionally incapable of doing that.

So, what do you do when your own mother tells everyone, and successfully convinces everyone in your family, that you are a hypochondriac? You stop talking about your health. That is what you do. You don't mention it anymore, because if you do, nobody is going to believe you. Compound this with the treatment I've gotten from the male medical profession over the years, and you can imagine what little desire I might have to tell people that I have any chronic, invisible diseases at all. I never usually tell people at all. I just don't bother anymore. If I do tell them, I always get the impression they think I am making it up, perhaps because of past experience. So it's just easier not to even bother.

I'm not sure why other human beings have such difficulty grasping the fact that a person can have a serious mental illness and also serious physical problems at the same time. I mentioned to my friend, L., today at her house that when you're diagnosed with mental illness nobody takes your physical health seriously. She used to be a therapist, and she told me she agrees with me. Apparently, I had never mentioned having Lupus to her before today, but like I said, I don't mention it much at all to anyone. It's really not remotely unusual for physical and mental problems to occur at the same time, in the same person. It's actually quite common. Back in 2012, at a NAMI conference, a researcher discussed the link between autoimmune diseases and serious mental illnesses. I went up to ask her afterwards if it was common to have both at the same time. She told me that if you have Bipolar Disorder, Schizoaffective Disorder, or Schizophrenia, your chances of having autoimmune diseases run in your family are always higher than if you do not. Autoimmune diseases happen to run in both sides of my family. My cousin with Lupus is on my dad's side. My uncle, who is one of my mother's brothers, has a different autoimmune disease (again, nobody ever talks about it). This is probably not a coincidence. Probably, in the future, you will be able to tell things like this to doctors and have them understand its significance. But right now, you can't. The researcher I spoke to did, however, tell me that a lot more research is being done in this area. I asked my psychiatrist about it last year. He said he didn't know anything about the connection between autoimmune diseases and mental illnesses, but told me that I should research it myself and then explain it to him.He's a good psychiatrist, but he sees tons of patients and does not have time to read much research.

It would be interesting to know what the connection is, but I guess, in the long run, it might not really matter, since none of these things have cures.

But it gets hard going through all this stuff by yourself. I have not one, single person in my family who cares how I am. My therapist and I talk about how I have to take care of myself and find other people to care about me, because I obviously never had a caring mother. There is J., from NAMI, who is an older woman (she's in her 70's, and my mom is 59), and I told her the other day in an email that she is more caring towards me than my own mother is. She at least understands mental illness, and devotes her life to helping people with mental illness. Tomorrow, J. and her husband are taking me out to lunch. I think after I told her that they are more caring than my own parents, she felt it was necessary to get together with me and get me out of my apartment, which is very nice of them.

Another thing that happened this week was that the frustration at school came to an embarrassing head. I went to see my statistics professor during her office hours Tuesday, to get help with her class. There were other people there who needed help too. This one guy likes to commiserate with me about how horrible the class is. I don't know what's wrong with his brain; maybe statistics is just hard even if your brain is fine. The professor said to me that I am doing well in her class. Since no one else was around when she said this, I told her that this was only because she had let me take the test at home. I have not asked her to let me take more tests at home, because I don't really want to ask for that since it would sound like a request for a special favor. Then, later that day in her class, I was confused. She was doing this thing, going around the room, where people counted off by number for what group they were going to be in for a group exercise. If you were number 1, then you were in group 1, etc. So everyone was saying their numbers. She got to me, and I looked at her, stupidly, and said, "What are we doing?" I felt like an idiot, and other people looked at me like I was intellectually deficient. Actually, throughout that class, people kept looking at me that way. So after the class, she told me to stay and talk to her since I was confused about something. It was 9 PM, and I didn't feel like keeping her there to explain things for me, but she did. After she explained it, I still didn't understand it at all. I looked at her and said, "I'm not a stupid person." She said, "I know you're not." I said, "But I cannot read books right now,'s really embarrassing." These words came out in a whisper. And then tears started rolling down my face. She said, "You don't have to be embarrassed, Jennifer. Not with me, anyway. Just get better. Just get well." I nodded and headed out the door. It was completely humiliating. I don't exactly walk around crying at the university most of the time. The only other time I remember crying there was another semester when my brain wasn't working, and I was trying to explain what was happening to the man who runs the office of services for students with disabilities. He handed me a box of Kleenex. It was very embarrassing.

As I explained to my therapist yesterday, the thing is that when your intelligence is the only thing you value about yourself, it is REALLY hard to deal with when you're brain doesn't work. She looked at me, smiled and did a "Mmmhhmmm" as if this was some big revelation. She told me that this was a very good thing for me to realize, because nobody should value themselves only for their intelligence, or for any other single thing, that we should all value ourselves simply for being who we are. I'm not really sure how you go about doing that. Society doesn't value people for who they are. Society values you for your accomplishments. In my life, the only accomplishments I've had were grades in school. I learned from an early age that teachers saw more value in me than my parents ever would. So I tried to impress teachers. I guess I still do that. I think if I do well in school, then somehow this makes me a worthwhile human being. I'm not sure why I think this really, and it does seem pretty silly. After all, the university I go to is not even a difficult school in the first place, so it's not like it's that hard to do well there. Probably anyone could get A's in all their classes there, so it doesn't really mean that much. But for me, it has always been a big deal. Also, I think it's hard to NOT feel stupid when you look at a book, and all you see is a jumble of letters on a page, and you do not know what any of it means, and there is technically nothing wrong with your intelligence. I mean, what explains that, exactly? I have no idea. This has been a part of my life for a very long time. When I was about 21, a psychiatrist told me I had Attention Deficit Disorder and that explained it. He put me on Ritalin, which I didn't take for long. Now, my doctor has me on Adderal, and I don't even know exactly why, other that his hope that it will help me get through school. When I don't take it, I can't even crawl of body, so, if nothing else, it's helping me make it to school physically, even if not there mentally. Dr. S.M. said I can just stop taking it if I want, since I told her my cognitive problems upset me more than anything and I don't think this drug is going to help them. But I don't know. I might be worse without it. I'm on the lowest possible dosage you can take, regardless.

Right now, I'm just trying to do what I can do. Today, I went to my friend's house to go in her pool. I like being around feminists who are older than me. We have intelligent conversations. It makes me feel like my brain still works a little bit, if I can manage even a little bit of that. Tomorrow I'm going to lunch on the beach with the J. and her husband. J. wants to see if we can find some "eye candy". She always teases me that I need to hook up with one of the eighty-year-old men at the YMCA, because I told her those are the only guys who hit on me, and she thinks it would be wise to find out if any of them have cardiac problems and also own property. It's funny coming from her, because she's almost as old as they are. (In reality the last thing on earth I actually care about is probably being hit on by some stupid man). I haven't gone to the YMCA in over a month, because I haven't had enough energy to do exercise. It's unfortunate, because I had lost a ton of weight and I don't want to gain it back, but that's not really one's biggest concern when one feels sick. What I'm not doing right now is revolving my life around my mother. The other day, when I was at school, she called me to announce that she had gotten a new job and she needed a favor from me. She wanted me to take care of her dog. Meanwhile, when I'm lying in bed and can't manage any housework, she is of no help to me at all and does not care about it. So I said, "Nope. I can do nothing for you. Ask my brother." He owes her favors. I do not. I am not doing a damn thing. I then hung up on her. Afterwards, I got angry and sent her a text. I said, "Do not contact me again. Your are under the delusion that I exist to make you happy. News flash: my life does not revolve around you. I have been in bed for five weeks and you have done nothing to help me." Of course, she did contact me again. And again, and again. Every day. She called me this morning at 8 AM, for no reason. I hung up on her. She called me again, two hours later, and wanted to borrow clothes from me. I hung up on her again. I have no room in my life for her nonsense. I don't have the energy or the inclination to put up with it at all.

I'm glad there are other people I know who are more logical and sane and kind than my mother is. I can talk to those people. Last week, I told you I was going to my friend's house for dinner and to do my laundry there. That was nice. She and her husband helped get my mind off things. She is a good friend. I needed to be around a friend. She has two dogs, and one of them is a new puppy she just adopted, my first niece whose name is Abby. I'll write her name on here because Abby is probably not likely to read this and get offended that I put her name on a mental illness blog. My mom told me several times after that day that she was mad at me for going to my friend's house, rather than spending time with my mother like I usually do every single weekend of my life. This is par for the course with my mom. If I have a friend, she is jealous. If I have a life, she is jealous. My world is supposed to revolve around her. So I repeatedly told myself that I have absolutely nothing at all to feel guilty about here. I told myself that I have every right to have friends, and every right to go to my friend's house, and there is no reason on earth why a 40 year old woman should spend time with nobody other than her mother. That is just ridiculous, that she actually expects me to live that way. I don't owe her anything. I've already given that woman everything I have to give. I am done with that. It isn't my fault that she can't deal with anything outside herself. It isn't my fault she will not go to therapy, even though I've been telling her for many years she really needs to and it would help her. It isn't my fault that she has no friends at all. That is her fault. That is not my fault. Other people do not put up with her, and her bullshit, so why the hell do I put up with it? It makes no sense. I'm tired of feeling guilty every time my mother wants me to do something and I do not do it. I'm tired of being blamed for her misery, all of my life. She is not my problem to solve. She can fix her problems herself.

There's an interesting dynamic that goes on in families like mine, where more than one person has a mental illness. My mother has Bipolar Disorder. My sister, for a while, was also being treated for Bipolar Disorder. My mother, my brother, and my father, and my sister, are all alcoholics. My mother and my brother are in recovery via the 12 steps. My sister simply doesn't drink anymore. My dad gets drunk every day and always has. That is how they all cope. My half-sister, who I never lived with, is also an alcoholic. My half-brother, who is a teenager, and me are evidently the only people in my immediate family who are not alcoholics, unless you count non-blood relatives like my stepmother and her daughters. In other words, the mental illness and substance abuse runs deep in my family. Both my grandfathers were alcoholics. My grandfather's sister committed suicide when she was 19 years old. It is a taboo subject in my family to this very day, even though it happened when my grandfather was 11 years old, and now he's in his 80's. What's interesting that happens in families like this is that you are left to fend for yourself. There were a lot of phrases my dad used repeatedly when I was growing up. One of them was, "It's every man for himself!". And that is how it was, and still is, in my family. Everybody has to find for her/himself. In other people's families, like people I've known through NAMI, sometimes a person has a mental illness and the parents devote themselves to helping her. The parents join NAMI, and they also become advocates and look up information all the time on mental health. But for many people, this is not reality at all. We don't have parents like that. We just have parents who are sick, and unavailable to help in any way. My parents, like I've said recently, never had any business being parents. So, basically, I raised my mother, who was out of her mind, and as the oldest kid, it was my job to take care of my brother and sister. It was also my job to take care of myself. I guess some sad part of me still wishes she had a mother who would take care of her. That is really kind of silly, I know. But I guess old dreams die hard. Nonetheless, I realize I'll never have that kind of mother, or one of those NAMI families where the parents care so much. I'll never have that. I'll never have parents who it would matter to if I'm going through more stupid medical tests. I've never had parents who were there for any of those tests. I've been through all of that stuff all by myself. I've dragged myself, alone, to every single doctor's office I've been to. And so did my sister, who has epilepsy. Do you think our parents cared, when she was a teenager having seizures? Nope. They didn't care at all. She took herself to neurologists, just like I took myself. It's every woman for herself. My dad got that right.

Here is a post I wrote about autoimmune conditions and mental health a year ago.

Here is a post about Fibromyalgia from three years ago.

Here is Lupus and Rheumatoid Arthritis (feeling sick from something forever and not knowing what it is). from 2011, before my doctor had told me "you definitely have Lupus".

Here, I nonchalantly mentioned having the Lupus rash while in the hospital last year.

Here is a post I wrote for Invisible Illness Awareness Week in 2011, called 30 Things I Want People to Know.

Here is a post on parallel forms of oppression and internalized shame, from 2010, where I discuss mistreatment by the medical establishment.

Thanks for reading! I read all the comments and appreciate them.


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