Category Archives: News about Me
Not the same anymore. And yet, I was that kid.
So I was going through that huge pile on my desk. You know how it gets, the annoying pile of junk mail. (I wrote “junk male” but deleted.) So I started throwing out stuff, empty envelopes and pages that my printer printed halfway, goofed, and then spit out. Those times I had to print out a test page and then said to myself, “Oh, I’ll reuse that paper,” and never did.
All that was an easy decision. And then it came to the huge, heavy magazine from Emerson College. Okay, kiddies, what am I supposed to do with this? I haven’t read it and I don’t read any of my mail except what comes from Social Security. And if something looks like it’s from the bank saying my card was canceled out. Once every few years that’s happened due to some charge on there that was funny-looking to them. Usually they notify me by phone and the mail notification is superfluous anyway. Banks are responsible these days. But those alum magazines irk me.
What am I supposed to think? They want money and I don’t have it. Not only that, what do they want money for?
They want money to enrich a rich kid’s life so a kid can fly to a foreign country, party, and have a good time. This is the college experience I suppose. I’m asked to give money so college kids can have a blast.
Yes, I was in that place once. Over the years I’ve had less and less money and can travel less and less. I wonder how I can put money onto my MBTA Charlie Card (it’s a disability card) so that I can pay for bus fare to buy groceries. I always wonder if the other passengers are going to yell at me when I’m trying to get off the bus with the groceries yet another time. It’s tough carrying food home in a knapsack, food for my dog and myself that I pay for with food stamps. That’s my life.
So the glossy magazine (which I don’t want to read) often tells about the wonderful work of these students. I do relate, but much differently than you’d think. Giving money isn’t going to do anything.
Yes, I can relate. I was in that place once. Everyone was a kid once. I went to college. I traveled. So here was that place for me:
I remember being alone in Europe. It’s the coldest place on Earth even when the temperature isn’t that low. I felt out of place in the train station. I silently cursed my mother for having given me a bright green ski jacket. Why did I wear that stupid jacket? Why did she always give me such garish colors, instead of something drab and ordinary? This stand-out color made it obvious I was American. Men and women hurried by, speaking clipped German, glaring at me, clearly annoyed at my mere presence. Spoiled American student. I hung my head. I had to get out of there. I had to figure out which train I needed to catch. But how?
No one would give me the answer. These train guys knew, but I had no way of figuring out anything. I didn’t deserve anything. Spoiled rich kid. They all looked down on me. I was nothing but dirt to them.
Finally, I asked them in French if they spoke French. “Oui,” the guy said. They did. So I asked in French how to get to where I was going and I got my answer.
This was how you survive the world. I deserved nothing.
I was alone somewhere. Some city, some country, not home. On a street. Just wandering. Other kids that traveled seemed to have it all together. I sure didn’t. I kicked the stones out in front of me.
It was around the time of my 20th birthday.
Back home, the Blizzard of ’78. I came home to a white world. I heard about what happened. People said no one had been able to get out for days.
I was a lonely kid once and that’s how I relate to kids. How you feel when everyone else is having a blast and you aren’t. And now, looking back, I remember.
No way do I want to throw all those colorful memories, even though they are sad, out the drain. My stories are precious and they make me the incredible person that I am.
Someday, I want to go to Emerson College and speak about eating disorders. However, every time I’ve called and asked if I can read there (telling them I am an alum and am published) I am turned down. Told some excuse. Put off. I think I’m approaching it the wrong way. Even at our 10-year reunion, I was told, “No, we aren’t having readings this year.” Now that’s weird. I felt so shoved aside by this college that I’d paid money to and worked my butt off and finished….So I’m now just asked for money and nothing else? Given no recognition whatsoever…..Do I have to be a rich donor? I guess so.
The glossy went into my recycling collection. I’m sad. I’ve got a bunch of things to do over the next few weeks, but approaching Emerson College and asking to speak there is one of my goals. I mean, I’m offering to speak there FOR FREE. No pay. A gift. This is far more valuable than any money I can send them.
But I’ve got to approach the right people, the right department, the right personnel. I was a kid once. This is who I am.
56 and free.
Yep, my new slogan. Last year, it was 55 and alive, this year, 56 and free.
This year I am more than just surviving. More than just barely hanging on. I am more than a thread, a small flickering flame, more than a candle in the wind, that tiny bit of oil left in the lamp, that miracle. I am a giant ball of unstoppable fire.
Rest assured, I don’t plan to shut up anytime soon.
Guess that sums it up. I thought up a fairly good idea today, putting together (finally!) for the first time, sort of a mental outline of how I’m going to at least start off the book and some kind of framework. I like my idea a whole bunch.
I signed up for a class. A one-day workshop that will take place in a couple of weeks. It’s only a few hours long and I think I’ll do fine.
Please, please, please, don’t let my body be sick that day! It’s hit or miss….I was supposed to go to a writing group yesterday and I was so sick I couldn’t go. Felt like a total idiot because I had to cancel. I had an unbearable headache and felt like I was on the verge of puking for hours on end. For no reason. No, no “stomach flu” and I hadn’t eaten anything shouldn’t have eaten. Probably just the kidney disease acting up. That’s my life now. I hope I’m not sick the day of the class, cuz it means money down the drain.
I don’t want to cancel AGAIN. I’m tired of being a no-show.
It might be a far shot…bear with me for a sec…remember I said I actually WATCHED those You-Tubes of the police beatings of that homeless guy that was brutally beaten a while back in California?
What happened was this: a homeless guy named Kelly was hanging out. A bunch of cops started harassing him. Suddenly, the cops, maybe four or five of them, were beating him senselessly! For absolutely no reason!
Yep, it all got caught on security camera and it is most likely still up there on You-Tube and I have watched it. It’s painful to see. Now this was a big eye opener for me on many levels. But one level was this: gang mentality. I doubt one cop, acting alone, would have done that. But acting together, something happened. It’s that ganging-up thing. Bullying multiplied.
I believe psychiatric abuse can happen very much the same, even with everything electronic, in fact, our electronic system is working against patients sometimes.
So, “She’s crazy,” gets passed around and the whole crew gets together in their gang meetings. Ever see a bunch of doctors in a huddle? Sure looks that way to me. Bunch of bullies.
See ya later.
On one hand, I need to put a lid on the past, that is, on the abuse. I do know there are those that choose to do so, to close that lid completely, and never allow anything to escape. I’ve spoken to some who have had to make a complete break even more than what I am doing. It’s quite clear that once you walk out, you can’t go back. Like divorce. You get tempted, you even feel sorry for the ex sometimes, but you can’t.
However, I am a writer and for that reason, I had to make a decision. I do know that there are many that cannot leave entirely and still keep one foot in. Me, no, no feet in. I feel that I must revisit, but only to write about it as a writer, and that’s it. Then, I need to put the lid back down and close it. It’s not me. Not part of me, not my life. Just this thing I take out and write about, then subject dropped.
So after I am relocated, I won’t speak of it. You can speak of your experiences to me, and I won’t mind, in fact, I will surely listen. But this will not be my life. I will only speak of this in writing. If you don’t know me as a writer, then you won’t know that part of me ever existed. If I ever give a reading, you may see a side of me rarely shared.
So, soon I will be walking away, complete.
I phoned the place where I put in a housing application…as I figure it, mid-August 2012. At the time that I put in the application, I was told the wait list was two to three years. I guess the person was mistaken. These things happen. Not all people who work the desks are properly informed and they’re only clerks.
So all this time (it’s now the end of the year, 2013) I’ve figured, “My lucky day is coming soon,” and looked to that one bright day when some Angel from Heaven would sweep me out of this hellhole apartment here. I’ve hated it since the day I moved in.
I got up the courage and made the call today. Put on my cheery, polite, business-like telephone voice I taught myself years ago. I’m particularly good at it.
The clerk who answered the phone put me on hold after I made sure she got the correct spelling of “Greene.”
I waited. Prayed, if you could call it that.
She said, “Six to eight.”
Then she went on to say, “Years.”
Oh. My. God. Yep, she said I had oh so magically moved up the wait list by one year so now I would be waiting one less year. But the good news was that I was still “active.” Good news according to….
Um, I’m alive. Yeah. Fifty-five going on fifty-six. In eight years I’ll be legally collecting social security, not “disability.” Same ridiculously low amount I can’t even live on, same crap, lots more housing options. Without the “disability” label, I will be free of discrimination for good.
Because on my body, there is not one scientifically measurable trace of “mental illness.”
Well, I’m not staying in this crap apartment. Period. There’s got to be a way….
Time for Plan B. That’s what life is all about.
The tent idea wasn’t such a bad one after all, if only I wasn’t so physically sick. I need to get my health more together. I’m getting better in a few ways, in many ways in fact, and I’ll talk about that in another post…it’s rather exciting, in fact.
Don’t you love the way I never give up? I never, ever throw in the towel. Truth is, I’ve thrown them all in already…there’s nothing more left to throw in! If you got nothing left, if you find yourself alone and trapped in some dark place (through no doing of your own, I KNOW this is how it happens), please, crawl out any way you can. I’ve sure been there.
Wow, what a crazy day I had yesterday, packed with meaning and action. I can’t believe so much happened in one day. You’d think there weren’t enough hours to contain it all.
First of all, I had more sleep Thursday night into Friday, that is, yesterday, than I’d gotten for quite some time, so I was rather pleased with that. I have no clue how many hours. Why do practitioners ask this question?
My answer to insomnia is first and foremost to quit counting how many hours of sleep you get or don’t get. This will immediately solve most any sleep problem. I’m not saying you’ll sleep, but insomnia will be less of a problem in your life. It will only be an inconvenience, and you’ll be far less tired and far less obsessed and you won’t need pills, nor will you need doctors. You will live again and only be mildly inconvenienced until the sleeplessness passes.
Again, don’t constantly look at your watch, don’t write down the number of hours you sleep and don’t make stupid sleep charts even if they ask you to. The sleep charts will make you more obsessed and this will cause all sorts of unnecessary fretting, worry, and further need for the sleep doctor and more bills and “treatment” you probably don’t even need.
So, there I was, awake in the morning with the realization that I had been unconscious, that is, without any awareness of my surroundings or even aware of Puzzle’s presence for many hours during the night. That was all unusual and rather amazing and shocking to me. Of course, I was delighted, too. I told myself, “Julie, you’re on the right track at last. Do the same thing again.” Not like anyone was going to believe me. But I believe in me and that’s what counts.
See, let me tell you something. I’ll look at my calendar right now and give you some specifics. For those of you who don’t know me, I have suffered from anorexia nervosa and binge eating for 34 years and sought treatment ever since a year into having this disease. I am 55 years old. So if you do a bit of math, that would mean I started at the age of 22 and sought treatment of sorts at age 23.
I say “of sorts” because there was no treatment. I hadn’t heard of eating disorders when I was 22 and didn’t think eating disorders existed. Therefore, I had no clue what was wrong with me, nor did the “therapist” sitting in the office with me. She didn’t diagnose me with an eating disorder.
I moved in with my parents and attended day treatment, where they had no clue what to do with me. They gave me the diagnosis “bulimia.” I had never heard of bulimia before. I had never thrown up. I had tried to make myself throw up but was unable to get the food to come up. Having an “iron stomach” runs in my family. Of us three kids, the middle one was the one who threw up now and then and the youngest one never did, and I, the oldest, never did either. I don’t remember my parents ever throwing up, although my dad used to joke that in the Navy, the Navy guys got seasick and then grew out of it rather quickly. He said you kinda had to to survive.
I was told that eating disorders were very minor disorders and only young rich girls got them, and then grew out of them quickly. I was told that there are no pills for them, and that the mental health system would much rather spend its energy helping out folks with the important disorders such as schiz, bipolar, and major depression, which you actually die from and actually need to be in the hospital for. They said I was complaining about something trivial.
My mom gave me a book about how some new kooky researchers (actually at Harvard) found out that the antidepressant Imipramine actually was very effective for binge eating. What did this tell us? Well, it says a lot.
My mind got working, of course. I was beginning to realize that there’s so much to this that these therapists didn’t even know. They weren’t even listening. They thought this was a behavior or coping problem or maybe some family trouble, when in fact something was happening that was maybe something genetic and had to do with very complex body chemistry.
Of course, I was right all along. I was right, and this is why in my case, chemical or some type of body change or intervention or combination of these works so well.
I spent a few decades begging for help from the “mental health system” and didn’t get much help. It wasn’t wasted time, not really. The begging for help was dumb, though. I don’t believe time can possibly be wasted. You learn things no matter where you are or what you are doing. You leave, you close the door behind you and walk away, and then live the next chapter. Hopefully you recall the past so that you can laugh about it and not repeat your errors in this chapter. Hopefully, you can help others on similar journeys. That’s how I see things.
So let me now zoom right up to present time. 2013. Beginning in April, I began to backslide quite seriously. I date it to around then I suppose. Maybe it’s just spring I have a hard time with. My late boyfriend always said that around that time of year it’s so cloudy and rainy here in New England that the weather would alone would put him in a dreary mood. He would get quiet and sullen. Then the sky would brighten and his dark mood would pass. This happened a few years, but not every year.
I highly doubt I have this “seasonal affective disorder” or any such “disorder” folks talk about. I think I dislike rain for practical reasons. I am car-free. I count on my two feet and our public transit to get around. So if the weather is nasty, getting around is nasty, too, or I choose not to go out. Also, walking my dog can be unpleasant when I have to dress in a zillion layers or dodge puddles and ice patches.
Have you ever stood and waited for a bus with cold rain hitting your face for ten minutes? Or had your umbrella turn inside-out no matter what you tried to do while walking home from a bus? Or stood at a bus stop with pain in your toes and fingers because they are so cold? Thankfully, I don’t get into this situation all the time. We certainly don’t have year-round unpleasant weather here. People who have cars have no clue just how affected others can get by the weather. It’s a practical matter.
So anyway, that was April. Big major worsening of my eating disorder. I tried very hard to get help. I remember making some phone calls and having these phone calls not returned, and having someone knowledgeable with authority attempt (or claimed she did) to make calls to my “team” on my behalf and claimed these practitioners never returned the calls. I think a lot of reason why this person clearly wasn’t making all that much effort had to do with the fact that I am a low income person and helping me out wasn’t profitable or of any monetary advantage to her or her organization.
I was getting quite scared. I was scared about what was happening to my body. I had had a nightmarish four-day binge episode around the time of the Boston Marathon and then after not one person seemed to care at all about that, I had furiously rebelled and dieted like mad.
This dieting continued. I further reduced my caloric intake. I was no longer binge eating at all. My weight dropped and I recall I had to lie and cover it up for fear that I would be forced into some “treatment” that would not only not work, but would backfire and make me worse. I was eating so little and knew that this was causing me to be unable to think straight. Around the beginning of July, I was constantly dizzy and feared I would faint. I think I did pass out on several occasions. I have records of a lot of this stuff and I don’t want to go digging into them now.
So my psychiatrist was completely unaware of how little I was eating. She saw that my speech was jumbled and thought I was psychotic. But of course, if she really listened, she wouldn’t have heard psychosis or paranoia. I think she would more likely have heard something resembling dementia, but she certainly wasn’t listening at all. There are many forms and stages of dementia and I’m not sure which form. I don’t like these “classifications.” I did tell her my problem was nutritional, but she wasn’t listening. I told her that I wasn’t eating and that was why I couldn’t sleep, and that I wasn’t manic, but she continued to accuse me of mania and insist that I take drugs for it. I was scared to tell her specific calorie counts for fear of being forced into treatment. I was in a bind over that.
Sure, I did want help. But not help that wasn’t helpful and never worked. Not “staff” that don’t care about their jobs and can hardly wait for the shift to end. Not therapists that are controlling and manipulative. Not a practitioner, who, despite their diploma from whatever prestigious university, doesn’t know a darned thing about eating disorders. Here it is 2013 and most practitioners still don’t know a thing about ED. Never mind that so many that claim they do have knowledge actually offer their services to women only. Do these folks really have knowledge?
Well, I want to change all that. And I will, of course.
So I wanted help but I knew that “bad help” was worse than no help at all. Bad help would only make me worse. I was very scared of bad help. Much of the bad help I’d gotten or been forced into in the past was abusive. At best, it wasn’t abusive but simply ineffective. If the bad help was in the form of a pill, I stopped taking the pill. If the bad help was in the form a person (therapist and the like), I stopped seeing the person. I continued the few pills that didn’t do bad things to me, and stuck with supportive people. There are a few activities that I find helpful. I’ll get into this.
So I continued to reduce calorie count. I knew I was no longer thinking straight at all. My world was like a dream out of make-believe. I wasn’t aware that my kidney levels were so maligned that no one, whether they had a “mental illness” diagnosis or not, could possibly think straight if they had kidney levels like I had at that time. When I arrived at the ER on August 12, apparently I had no potassium in the blood sample they took. Nothing at all. That’s just one of the things. The BUN and creatinine were also way off that they said my kidneys were in acute kidney failure. Not that I exactly know what that means, but that’s the medical term for it, the one that is written on my discharge statement.
I sure knew all along I wasn’t psychotic and a pill wouldn’t cure me. I knew Dr. P was wrong. I tried to tell her. I guess it was in June that I showed up at her office and all she did was yell at me. Literally. She insisted that I take antipsychotics. She said (I am quoting you here), “Julie, I am giving you this pill to shut you up.”
I am not kidding you.
Yes, I tried the pill for three days. I gave up quickly, and am relieved that I did. The pill she recommended, Abilify, caused a worsening of insomnia and was rapidly causing mania. I do have witnesses. They even pointed out my rapid speech. They said they were enjoying the jokes, but said I was speaking so rapidly that they had to make an effort to concentrate in order to follow me. I realized that had I continued to take Abilify, I would have soon after ended up on some trip via airplane running after some movie star, or spending thousands of dollars I didn’t have, or going naked in the streets, some Abilify-induced “manic” episode for which I’d end up hospitalized and told I was manic and put on more drugs. I tapered off the Abilify by splitting the pill in half and then in quarters and then into slivers, and then I stopped it. I was trying very hard not to crash off the drug-induced manic high. Unfortunately, I did indeed crash, but this lasted one day only. As soon as I realized that this was a crash and in fact was also drug-induced, I was again okay. No more Abilify for me, thanks!
So that day, if I recall correctly (why this happens to stick in my mind I have no clue) was June 18th. I remember phoning the local crisis team that day. I asked for help. They were supposed to phone me back. I waited. These folks aren’t supposed to lose track of people that they think might be suicidal, but I guess people with eating disorders aren’t very important to them. During the course of the next few hours, they forgot I existed two times and I had to call them and redo all the “paperwork” twice. They said the shift had changed and information hadn’t been passed on. Great excuse. I think those people are drugged. They seem incredibly sloppy, irresponsible, and absent-minded. Finally, I got forgotten about again, and that was around the time I was coming out of the crash anyway and getting to feel myself again. I told myself I know I exist and that’s all that matters. It wasn’t worth it to point it out to anyone who just plain didn’t care anyway. There are, after all, a few billion people on this planet.
So I got out of the hospital August 22. It was rough in there, to say the least. I didn’t blog the whole time. I didn’t do any communication on Facebook. I e-mailed with a few people and had phone contact with a few people. There was only one reason I didn’t blog. The reason was that I figured the hospital was probably well aware of my blog and most likely checking my online activity. They sure didn’t want any “liability” problems, I assumed. I figured no matter how irrelevant the posts were, they’d get mighty scared of what I “could” say in my blog, so they’d confiscate my computer. I could talk about knitting or something, but they’d still confiscate my computer. Trust me, these folks were ruthless. Not all of them, but many, shockingly many.
I got scared when I made phone calls as well, cuz I never knew what was being overheard. Sometimes, someone would be around but I was rather sure the person didn’t understand enough English to be able to follow my conversation, or they were talking in another conversation on their own phone, so I was safe and my conversation was private. But I’d wonder if someone else might be just stepping into the room within earshot yet out of my view. Whenever I tried to lower my voice, the person on the other end of the phone couldn’t hear me. I had laryngitis for a few days and that made the phone situation extremely frustrating. I tried to e-mail people, which had the privacy advantage, but it got tough with the constant interruptions. I’d start an e-mail and be a few sentences in, and suddenly some doctor would enter my room and I’d have to shut down (“sleep”) my computer. Some of my e-mails would take all day to write, or even several days due to interruptions. By then, I had to revise what I’d written because it was now outdated.
But as I said, there were of course problems from the time I entered the hospital. They knew nothing about me. I’d been to their ER a bunch of times in recent years but I guess no one dug up these records. I went there to have my broken leg fixed in 1999 and went there to have a tubal ligation in 1995. They have those records. I was in their psych unit also in 1999 I think, when it existed.
It was terrible there and they weren’t competent at all. I didn’t need psych hospitalization in the first place, and I don’t think they really knew what to do with me. I’ve spoken of this time before here in this blog…it was the time the psychiatrist I had messed up badly with my meds, causing severe insomnia. So I thought, mistakenly, that the problem was ME! It wasn’t, of course, I had medication-induced insomnia. The dumb doctor insisted that I was depressed. Whether I was or not doesn’t matter because I was so darned exhausted I don’t think it was at that point for him to say. He insisted that I take more and more of this insomnia-inducing antidepressant, Effexor, and go to a sleep clinic, make sleep charts and get very obsessed about sleep. Of course, this made me a wreck. So I went to Mount Auburn’s psych unit. Mount Auburn said I had a “coping problem.” I told them to fuck off. I told my psychiatrist to fuck off. I went to Dr. B, who looked at my med list (he got this med list by simply asking me to recite it) and then his jaw dropped. It would of course have dropped 50 feet if there were 50 feet to drop to or if his jawbone would have allowed it. He adjusted my meds and took me off Effexor quickly. In two weeks I was sleeping fine. I sure coped well, and firing both the bad doctor and the psych unit was the best way to cope, don’t you think? I went back to school and did great. And then I broke my leg. Bad luck. The crack in the sidewalk was in the wrong place at the wrong time. It so happened I had my head turned to look at Halloween graffiti just then. Oh yeah, it was November 1st.
I am the luckiest person alive because my broken leg healed so well. They put three screws in the bone right where my knee is and I still have those three screws in there. Every now and then, some doc insists on taking the screws out. I say, why bother? It works fine. It looks a little weird but doesn’t hurt, and I can even run, which is more than you can say for most 55-year-old people. Some doc will insist I have arthritis in there, but I say the arthritis is so minimal that “no running and no walking” is a rather dumb determination. “Don’t overdo it” is pretty much a rule of thumb for anyone unless they are maybe 21 years old, when the thing to do is to overdo everything, experiment, live, and be joyful, and then write a nice book about your wacky trip once you’ve wised up. But don’t take that as gospel truth.
Well, I was going to catch you up to yesterday, Friday, so I will. I got out of the hospital August 22. I was so glad to be free at last. I do know the difference between caring and abuse and I knew that many of the personnel had been disrespectful and many had been abusive. Some had been truly caring. I had tried many times to complain about the abuse but my voice had not been heard. Many times, I had no idea where to go to complain. I would try to approach someone and they wouldn’t even listen or they would tell me I was lying or stop me before I even got a sentence out. I do recall the folks that did listen and it’s sad that these all were folks that were powerless to help me, simply because of their position in the hospital didn’t give them enough voice. One person came to my room and asked me if I had any complaints about my care. I spoke with her at length only to find out that today was her last day on the job. I told myself none of this would even get communicated. She’d go home in a few hours, never come back, and if she didn’t write it down someplace important where it would get noticed, I might as well assume there would be no follow-up. There wasn’t.
I came home and the day after I started a partial program. I did my best in the program but didn’t realize until my arrival that the program no longer is for eating disorders. It’s for people with other psych diagnoses and it’s all DBT. I found DBT very boring. I found that I already have these “skills.” I found that i was teaching others the skills and life lessons I already knew because i had taught them to myself. You sure don’t need “therapy” to learn these things because they are common sense. I was reassuring the other patients all the time, and I really wasn’t there for myself. The patients had phobias and panic attacks, anxiety and depression and the like, and all sorts of “treatment acquired habits” that I either have shed or never had. It’s not their fault. You just have to unlearn this stuff, learn how to quit being a patient. Also, the bus ride over there was a nightmare. I had assumed it would be a ten-minute wait at most but most of the time I was waiting for the bus over 20 minutes. Sometimes, I waited over a half hour. This bus is known to be the worst bus in Boston. The ride itself sometimes took a full hour. Then the program was five hours, not the four I expected. I was supposed to be lying down for as many hours as possible, not sitting on a bus or in a chair in some “group.” Eventually, I quit. I had only been there three times. I had had enough. The good thing about the program was that the staff and patients were good people. I never spoke of the abuse in front of the patients but I did tell the staff. Not once did they tell me I was lying or exaggerating. In fact, they were sympathetic to the extent that their professional boundaries allowed it. They fully understood why I was leaving the program and why this was a logical thing for me to do.
I was having a terrible binge eating problem. This began right after leaving the hospital and continued on for weeks. I had gained 20 pounds in the hospital and at the time of my release was now at a good weight for my height. I am still at this weight roughly. I have stopped binge eating.
In the hospital, the doctors insisted that I stop taking the med I’ve been on since 2006 for binge eating. I attempted to tell them in every way possible that binge eating was and is a life and death matter for me. Like fixing a broken bone or pulling a rotten tooth. There is no question, you fix it, right? You don’t leave it broken. Same deal. Try to tell some doctor that thinks he knows it all. They think I’m full of BS.
It’s a tough world, folks. I knew right away I needed to do something. Finally, I admitted to my primary care doctor that I’d been binge eating. She said she didn’t feel comfortable permitting me to restart the Topamax and insisted that I consult with the kidney doc. So I consulted with the kidney doc and he said fine but he wanted psychiatry in on it. I said, “F psychiatry,” and restarted Topamax. I told myself I do know psychiatry isn’t real science. Mostly, these folks take lucrative bribes from drug dealers, representatives, and salesmen.
I began Topamax Wednesday the 4th of September, and my last binge was the 9th. I am so lucky that I react quickly to these drugs. I know it’s unusual because for most, it takes weeks. Also, I had recalled that Dr. P had told me it wasn’t necessary to do such gradual increases if I were restarting, because I’d been on it before. I had to go under this assumption. It was a life and death matter for me, a matter of survival. I felt that the binge eating was going to kill me and I was so scared. I knew it was more important to get it under control than anything else.
For me, a thin person, the risk isn’t so much that I will become overweight or that I will develop diabetes or get an overweight-related problem such as arthritis or a heart attack. The problem, for me, is that my stomach could rupture in a binge because the binges are so large, or I could get suicidal because the binges cause something to happen to my metabolism or blood sugar (not sure) which causes a sudden depression due to some chemical alteration, and really, no one believes me about this, but it’s true. I get so physically uncomfortable and full that I cannot walk, sit in a chair, or be in any body position comfortably. Often, I find even breathing is difficult because the food in my stomach presses up against the lower part of my lung area. I believe this is called the diaphragm. I cannot properly lower it due to food being in the way. Now do you believe me? Now do you believe I cannot sleep with a belly that full?
Of course, i was quite lucky that I indeed had Topamax pills in my possession. When it came time that the prescription was up for refill, even though I had plenty I refilled it. You never know. I do know that with the kidney loss I do have to take a lower dose, so I don’t take nearly as high a dose I did previously. It is still effective.
Topamax does not cause weight loss, contrary to myth. Maybe it did for me back in 2006 briefly, but probably most of the weight loss was due to not binge eating and not due to taking the pill. I think if it’s a life and death matter to stop binge eating, for god sakes give the person what they need. Topamax isn’t even on the market as a weight loss drug. Get real.
So anyway, that was Wednesday the 4th, when I saw the kidney doc. I also did myself a favor and met with a therapist who does an alternative healing method. This is very short-term therapy and it’s designed to be that way.
I think all treatment these “mental illnesses” should be short-term, and not go on for years and years. There’s no reason why anyone should be stuck in “the system” for life or straitjacketed by psych meds or ever behind locked doors or tied down.
I met with the therapist over Skype twice. Our focus was trauma. The first time we met I felt uncomfortable afterward, like something was unresolved. I didn’t tell anyone because I didn’t know if I was supposed to feel this way. But I told the therapist the second time we met, which was the following Monday, the 9th. We talked about this at length. I feel that the work we did together (that I continue on my own) contributed in a major way to my being able to not binge eat, eat well with fewer inhibitions, and feel more independent, confident, and strong overall. We don’t have any future meetings scheduled. I felt fine I guess maybe 12-16 hours after our last meeting Monday the 9th. I’ve felt fine ever since.
I have fired CBFS some weeks ago. So someone phoned me from DMH and I suppose criticized me for having “no support.” I mean, geez. I’m fine, lady, CBFS did me no favors and I sure don’t want that nuisance “service” back in my life. The qualifications, that is, requirements to be a CBFS worker are that you need a cell phone and a reliable car. Anyone out there with a cell phone and a car? Go work for CBFS. You will never get fired because you are working for the state. Great benefits. You get a vacation, and you can lie and pretend you’re sick a really long time. Combine that with your vacation and you’ve got it made.
The 13th, yesterday, I saw the NP, that is, nurse practitioner. It went very badly. I was shocked at how badly it went. This is the fourth mental health person in this health plan I’ve seen, and they were all bad. I am so shocked. They were all incompetent. Was this one the worst? I was so shocked when I left that I didn’t know what to do.
First of all, she treated me like I was some criminal. Her assumption was that everything I said was a complete lie or that I was delusional about everything, every detail.
I told her I had anorexia with binge eating. She told me this was not possible. At this point she “looked me over” and was obviously looking at me to see if I was underweight. I am skinny but not emaciated. She said again that this diagnosis didn’t exist. So I guess she’s done her textbook reading and assumed that all anorexics either only restrict or if they binge they throw it up.
Oh, baloney. So she assumes all binge eaters are overweight? She asked me the calorie count of the binges. I told her. Most likely, she left off a zero when she wrote the number down, or the number she heard lacked the proper amount of zeros. She didn’t seem at all concerned, and so I guess she assumed I was lying. I told her I’d started taking the Topamax and I told her how much. I told her how much I’d been on previously, and I told her that Dr. P had prescibed it for binge eating and that i’d been on it for that purpose for years.
Guess what? She thought I was lying. I’m not kidding you. Lying. I told her I’d been on Neurontin too, and she assumed that, too, was a lie. She asked over and over if I had guns in the house and if I felt like killing anyone. I told her that I have no guns and this is irrelevant. I told her I needed help with my eating disorder and that was why I was there. She said “Why can’t you take Haldol?”
I told her I had a history of Tardive Dyskinesia, so that ruled out any of the older antipsychotics. I also told her that I no psychotic symptoms and no need for such drugs. Furthermore, many of the antipsychotics cause binge eating for me. The ones that cause weight gain should never be taken by anyone with a history of anorexia, because (at least for me and others I know) they backfire and cause a relapse. These are certainly not pills I want to take! Not even one! I’m terrified! Even to take these for sleep would be like taking poison!
She kept on pushing the antipsychotics, based on what (as I told her) other practitioners thought of me. Her conclusion was based on my history and maybe on the fact that she assumed I was lying that I had been hospitalized over 50 times. Maybe she can’t do math properly. If you are 55 and you have been hospitalized over and over since just before your 24th birthday, then it’s quite likely that it all adds up to over 50 psych hospitalizations. Often, I’d get released too soon, maybe after a couple of days, and end up back in there. But of course, this NP was far too young to fathom all that, or to be able to conceptualize even being in the mental health system that many years. She’d never been tied to a bed herself, I’ll bet. I hear in some psych schools they tie each other down, but that’s not without consent. There’s a difference.
Or maybe she thought I was lying when I said I’d been sexually assaulted several times. I said if you are a 55-year-old woman, you most likely have been sexually assaulted more than once in your life. Many married women are assaulted by their husbands and of course this never goes on record. I believe it’s called marital rape, and sadly, many religions will deny it exists and tell the woman it’s supposed to happen, that her husband is supposed to rape her. I’ve never been married, but that’s how lots of marriages end up. Anyway, this NP was writing furiously and was clearly assuming that I was lying about being raped. Yeah, this was just what I needed to hear, another person telling me I’m baloney.
So I told her I have my master’s degree, and I think she thought this was BS as well, and I told her I’d written a bunch of books, which apparently she thought was impossible for a person as psychotic as she thought I was. Again, she asked me if I wanted to kill people and if I had guns. Wow, did I ever feel like shooting this lady.
So she took my blood pressure. The blood pressure cuff she brought in was the adult kind. She took that one back and brought in the kiddie one for my skinny arms. My muscles are atrophied from weight loss and most guns are so heavy that I can’t lift them. So lady, if I owned a gun, I wouldn’t really be able to make good use of it. I’d have to hire a hit man to shoot you.
Then she insisted on weighing me. I said, “I weighed myself this morning cuz i knew I was coming here and figured you’d ask.” But naturally, she assumed I would lie about this, too.
This time, the joke was on her. Her scale was way off. Either that or she was so dumb to weigh me with my hat on and my jacket on and forget to ask me to take stuff out of my pockets. Do you think at that point that I really cared? Absolutely not. Still, all the clothes and sneakers and my wallet and cell phone and the two 16-oz cups of coffee and all the water I drank (normal for me) and breakfast didn’t account for the eight and a half extra pounds the scale added cuz I must have gone to the bathroom, too. Her scale was electronic. I was laughing my ass off later.
She said no further appointments are necessary, that she refuses to prescribe Topamax and she won’t see me unless I take antipsychotics. I said I don’t want them, and that’s my right, goodbye.
Later, I phoned my health plan and flat out complained. I said I’d seen these four practitioners, and on behalf of folks with eating disorders, for godsakes get someone competent that knows ED in there. I said I was forced to leave the health plan at this point and go elsewhere due to this negative experience. I said that what I’d been through was so disrespectful and rude and no one should have to experience it. The person I complained to was a good listener and she took note of certain things I said. She asked me if it was okay if the supervisor at the site where I’d seen the NP today gave me a call. I said it was okay.
Meanwhile, I set up something with another health plan. I was frustrated that it won’t be for another month till I can have the initial meeting. Then, it will take another six weeks before I can meet with psychiatry and another few weeks for them to even decide if they will take on my case. I don’t think it’s fair to someone with this Medicaid and Medicare both, really an impossible combination as far as mental health and eating disorders go, to put them on a waiting list, make them wait only to turn them away. I told this person that wasn’t playing fair to us folk, but made the initial appointment anyway, with reservation.
The supervisor from my current health plan phoned me not long after. I was pleased with our conversation. She said she was not happy about what happened and she wants to set me up with an outside provider who is knowledgeable about eating disorders. She said she will keep me informed as to how the search is going and when the appointment will be. I said my only time requirement is to keep the commute in mind and early morning can be rough from a distance on the T.
Still, I am covering all bases. I am assuming nothing. Surely, my experience is that these things tend to fall through. I may end up pleasantly surprised…who knows? All I really need is that script for Topamax before my refills run out. I don’t want to resort to buying it illegally.
So then I guess I took a nap for a bit. I think I was interrupted by a phone call after ten minutes or so, but I can’t recall. I packed up and went to the gym for the first time since the day after the Marathon. Yep, the Boston Marathon 2013, and I live in Watertown, Massachusetts.
My gym is a quick bus ride away. I bring very few belongings and I shower after I get home again, not at the gym. I bring a padlock and lock up what I do bring. I had no clue how it all would go. Of course, my body is somewhat different than it used to be, with my kidneys now flying at half mast or so, and a bit more weight on me. I’ve ended up at about a weight where I should be, but I would like to develop more physical strength. When I sleep my kidneys do the right thing and take care of the edema but I do have to be patient.
The person at the desk greeted me. Wow, did it ever feel good that she remembered me. That meant so much. She’s the nicest lady. Smiled and said she was glad to see me back. I joked and said I was lucky to be 55 and alive. Not everyone 55 is alive, after all. I threw a fist in the air for dramatic effect and to be funny, of course. I hopped into the locker room. Of course, as usual, I had the same ole panic that maybe I had gone into the men’s instead of women’s locker room, then I laughed, telling myself that I always think the same thing. If I’ve ever made that mistake, I’ve forgotten.
I changed into workout clothes and strapped my MP3 player onto my arm. These MP3 player arm straps seem to be made for adults and not kids. If they made a kiddie one I’d get it I guess. Most adult ones slide down my arm, and that’s very embarrassing. Or I have to wrap the elastic strap around the player and that ends up covering it over so I can’t adjust it while it’s playing. This particular strap I am currently using came from elsewhere, and seems to fit tighter so I substituted it for the strap that came with the holder for the player. It’s just one of those annoying and embarrassing technicalities about having anorexia that I wish didn’t exist. If my shorts had a useful pocket that would solve the problem, but the pair I had on have no pocket.
So, treadmill….Hey, did you know these treadmills count calories? Yep, the treadmill assumed I weighed a certain amount (I don’t) and calculated how many calories I was burning. I was laughing about this. Saying nyah nyah to the treadmill and joking about calories the whole time.
I put on some music and started walking. I walk fast considering what a shrimp I am. Being a short person runs in my family. We are all short. Anyway, I can walk fast. I quickly got up to 4 miles per hour and felt fine with it. After a few minutes, I was able to maintain 4.2 without difficulty. I walked at that speed for most of my workout. I broke into a run within I’d say ten minutes of starting and kept on running for six minutes or so but then decided to go back down to a walk. I only ran at 4.6 miles per hour. Even for me, that’s a slow run. I kept on walking at 4.2 miles per hour for the remainder of the half hour. Only at the end I slowed so that I could have a proper “cool down.” My total was two miles. I was wicked proud of myself. First day back and I’m fast as lightning.
So I was on the bus and told myself that Puzzle needs rice. Where could I buy rice? I figured I’d get off at Watertown Square and take the 71 bus to those little shops in East Watertown and buy it there, then come home. So I was on the 70 and transferred. I had to run to make the transfer and felt confident and strong about doing so. Wow, a month ago surely I couldn’t have done that.
It so happened that the shop I went to had some good deals, so I got other stuff too, not a lot. I came home. I ate and fed Puzzle and walked her, not in that order.
Then my friend was texting me and I told her about my day in my texts. I don’t want to tell you what I said or what she said because everything will be out of context. Suffice it to say that I dislike being called crazy. I feel confident that I am not crazy and told the person I didn’t need that type of talk anymore.
I don’t hang out with folks that call me crazy. I don’t hang out with folks that THINK I’m crazy, either. So they can “yes” me with their lips but when I catch them lying, I’m outa there. There are a few like that. I end up noticing the lies after a while. Eventually, they let something slip. It’s kinda inevitable.
That was something the short-term therapist said that was extremely helpful. He said there were others who had been abused by the System and others who also had been abused similarly in hospitals. Surely, these folks would know that I am not lying and not crazy. I can go and find these people. I have, in fact. I am delighted because the folks I’m finding are positive, happy people. They are happy to be free of the System and happy to be well and not brainwashed and not drugged and not dealing with side effects and doing something productive instead of going to “group” endlessly. It’s amazing. There isn’t just one movement. There are countless groups sprouting up that you can join, each with a slightly different approach.\
So that was my active and very crazy day yesterday. I feel wicked good right now. I think I’m hungry, too. I think I will go make something to eat and end this post. Have a nice evening.
This is a chronic problem. I live in public housing and I’ve been a tenant with the same housing authority for roughly 20 years. I’ve lived in this building for five years. It’s an eight-story building. I’d say this past year has been the worst as far as lack of keeping up with repairs goes. But let me focus on the hot water problem.
Or, rather, lack thereof. The first year I was here, a lady whom I’d barely ever spoken to moved out in disgust, kind of slamming things around in the process, yelling about this and that, and I do recall her ranting about the lack of hot water, the hot water seeming to go dead on her during those crucial times that she really needed it. This event, her leaving in such a storm, stuck in my mind. She was also pissed off about a particular neighbor who I guess was harassing her but I have no clue if this was true. I don’t talk to anyone and he still lives here. But that year I don’t recall much of a problem with the hot water on my end. I remember the hot water not working one day and that lady having a fit in the hall, but this was a long time ago.
Well, back to the present. This past winter was the pits. I’d say more often than not, maybe five days out of the seven days of the week, I was unable to take a morning shower because there was no hot water. In winter, you can’t take a cold shower. So it would be freezing in my apartment and I’d say to myself, “Gee, I’d love a shower so I could warm myself up,” but I had no way of taking one.
My assumption was that this was a building-wide problem. Usually, I could wait an hour or two, and the hot water would start working okay. But by then I’d already walked Puzzle and I was already dressed. So I’d get undressed and I’d shower.
On church days, that is, Sundays, this of course sucked. It would mean I kind of faced going to church dirty or not going to church at all. I mean, it ended up being one of my many excuses not to go to church. The hot water wouldn’t come on at all until 10:30am, which was the time that services started.
I really want to go to church tomorrow. So, since we do what we have to do to survive, I’m plotting ahead. I’ve been hoping for a shower tonight. I’ve been washing my dishes with a combination of hand sanitizer and soap. It’s a little tough with the water being barely above cold.
Well, the hot water hasn’t been working, folks, all day today. That is, today is freaking Saturday, it’s hot as Hades out there, and I’ve been out twice. Do I take a cold shower? I can’t go to church without a shower. I’m no kid anymore and I know I used to take cold showers, suck it up and all, but I’m not like that anymore. What’s everyone else in this building doing? Don’t they take showers? They must shower. They don’t stink, for godsakes. Why isn’t anyone else complaining?
I hear no banging downstairs and I am wondering if our maintenance department is even working on the problem. If I call them, I get charged $25 just for calling on off-hours. What do I do? Wait for it to fix itself? That’s what I’ve always done.
Really,no hot water, all day long?
I phoned the town about the “beeping” problem, and something got done. The housing authority went to all the apartments in the building, and replaced all the detectors with new detectors with fresh batteries. Guess what? Mission accomplished. I was the squeaky wheel who actually did a favor for everyone here in the building. We no longer live with this constant, horrible “beeping” sound, the sound of carbon monoxide detectors with dead batteries, which frankly was inexcusable.
I wrote to a town politician about recycling here in the building. Recycling is the law in Massachusetts and our building wasn’t providing recycling bins that residents can use. The town politician agreed that it was inexcusable that we had no recycling bins, especially since this building is run by the state of Massachusetts. Well, lickity-split, there you had it, the recycling bins appeared not long after I wrote the e-mail. I wrote about something inexcusable, and something got done.
No hot water? Is this, too, inexcusable?
What can I say?
A complete technology crash within about ten days. I can only say it sucked, but I’m back.
One day (as I think I mentioned on the You-Tube I made, you-tube channel juliemadblogger) I was walking out of the bathroom, innocently enough
I was trying to rescue my clothes, because Puzzle was throwing up on them.
Now, this is a moment of panic if ever I saw one.
A naked, not-so-great-to-look-at 55-year-old woman running to rescue her clothes because her dog is puking on them.
It’s morning. Not that early, only a couple of weeks ago.
So like I said, in the process of rescuing my clothes, my rather newish laptop went crashing to the floor and it’s more or less totaled.
Well, I told myself there wasn’t all that much data in it that wasn’t duplicated on my old reliable desktop, and I never really liked Win 8. The little laptop didn’t cost an exact fortune. So, I decided I’d take it as a loss, and maybe go to my nice laptop repair guy someday and have it repaired for less than the other store was quoting me. Someday, sigh. But now, the screen was popping and stuff. Time to turn it off. Just go to bed. Cry or whatever.
Puzzle, don’t puke again for a good long while, okay?
So, maybe a bunch of days later the other disaster happened that I’ve probably told you about…technology, again.
I was asleep and woke up to find my old desktop computer was completely kaput. Gone. Dead as a doornail.
Now only the night before, I’d done a backup using my portable hard drive. I had no clue why I was doing the backup but I figured I might as well. I hadn’t been doing them that often. The last thing I expected was a crash. And right before I fell asleep, I backed up the book I was writing on one of those thumb drives.
So this is all rather weird cuz I had just changed Internet services and just downloaded a file having to do with this modem they sent me. So I call this new Internet service and they tell me,
“Your new service isn’t starting till October 31st and you aren’t supposed to be using that modem. Please discontinue using it and restart it October 31st.”
They had sent me no mailings saying the service started October 31st. In fact, their mailings stated stuff like, “Plug your modem in and have Internet in a jiffy.” And their contract was all confusing and had all this legal stuff in it….They were calling me at all times asking me questions, it got to the point of what I would call harassing. I am still getting calls but they seem to disconnect as soon as I answer. I’ve canned them and gone back to my old service. There is talk in town about people who received these modems and were told the same thing, no service until the end of October. Many were Apple modems but mine was a different one and I paid $30 for mine…I should ask for that back.
So, all that bit rather sucked, relying on a cell phone to reach the outside world for a bunch of days, and thinking I was going to have to go that way through October, snatching free Internet outdoors when I could.
One night, I sat outside the library (this is a scream) and used their Internet one night, cuz I wanted to see my e-mail on full screen. I was tired of looking at the tiny screen of my cell phone. The laptop I was using was like an antique practically and worked at a snail’s pace, but it was what I had. It was darned late, well after hours. I had a large umbrella with me. So I was packing up, decided to head home. Now, folks, here was my mistake. I decided to turn off my laptop instead of “sleeping” it. Why was this a mistake? The darned thing did an update. Now, there was only one Windows update but it was the Update from Hell you never, ever want while you are sitting at the library late at night while the cops are driving by and might nab you for loitering. Of course, I’ve already called the library and they’ve told me it’s fine to go sit there after hours, but it’s so late that I’m wondering if a cop is going to ask me to leave. Do cops understand Windows updates? I wait…oh geez, longer and longer. The freaking update from Hell like you would not believe. So it starts to rain. I put up my umbrella and it’s still updating and updating and updating forever. I start to wonder if I’m going to have to call a cab and hold my computer open, telling the cab driver I need to rush home and plug the damn thing in. Surely, I can’t walk home holding the computer open, cuz I’ll trip and fall. So about ten more minutes pass while it’s raining on me and the thing is updating still. I am meanwhile writing an e-mail, under the umbrella, with my cell phone. This is so comical, a 55-year-old woman and her dog under the umbrella into the night. Microsoft, did you have to do this to me? Finally, the Update from Hell was over. We were home when? 12:30pm. Jesus. I was exhausted. I’ll never forget that night. I guess that was one thing that made me decide I wanted home Internet back.
And I was glad when this machine that I am writing to you on arrived safely a bunch of days later. It runs. It’s a refurb. I was lucky to get it. It runs Win7, not bad, not too hard to get used to. With it came a little webcam. It took me ages to get the webcam running but now it does.
I’d like to restore my old files from the old machine. I’ve written to the tech support people for the portable hard drive, cuz I want to restore the files properly. I expect them to respond Monday.
Well, why am I telling you all this? It all kinda affected me in a big way. It’s ironic that I live in the most densely populated town in Massachusetts, but I can’t walk out my door and say, “Hello, how are you. You can pet my dog if you want.” It totally sucks that people take one look at me, judge me based on my appearance, and decide they want nothing to do with me. So where are the folks that care about me and love me for who I am? I speak to them through technology, through the phone and the computer, and that’s why I need this machinery. That’s why the technology crash really affected me.
Watertown, wake up, folks. I’m not a monster. I don’t carry weaponry, and I’m not from outer space. I’m flesh and blood. I have feelings just like you. I’m not on drugs. I’m not violent, never have been, and I don’t hurt children. What’s the deal? It’s too damn hot to turn our backs on each other.