Help

47

At the end of Nineteen Eighty-Seven, the year hadn't happened at all as I'd expected. College was gone as an option and with it any expectation of 'A Future'. My health had bottomed out resulting in my no longer working. I had found myself a victim of what I would eventually term 'medical fraud' at the hands of my mother's primary care doctor, I had been diagnosed with two things that could partially explain my otherwise unexplained weight loss, but no one was willing to treat me for them. My mother had made it very clear that she wanted me out of her house and apparently on the street as I didn't know of any other options. I had even received a follow-up letter from the producer of Doctor Who thanking me for my interest in the show, due to my latest sample script and story ideas, but that they would not be able to consider my submissions anymore. Even that wild card to gain some financial support and possible employment as a writer was now gone.

I had filed for Social Security Disability Insurance, SSDI, and since I noted I didn't have any doctor to provide a medical review of my condition, they forwarded my labs results and hospital records to another doctor in the local area. Now they contacted me and wanted that doctor to see me and examine me. I went to his office as requested and spent about an hour & a half filling out a detailed medical questionnaire. Once done, I got to wait at the office for another hour as he took his lunch break, then I was lead into an exam room and asked to undress except for my underwear. No gown provided, I did as I was told and shivered in the cold room until he came in.

When he did he said he was surprised how clearly he could see all of my vertebrae and my ribs. He did spend a moment noticing my protruding nipples, but with my years of emaciation even my breast development had largely wasted away. He asked about my health history and I told him of the years of weight loss and not being able to find a doctor to fully diagnose it and treat it. I asked if he would be helping me with it. He said no, that his role was just to evaluate. Once he was done noting my reflexes and my ability to follow the movement of his pen with my eyes, etc., he was done. He noted in his records that I was 'cachectic' and his review was over. I asked how much longer I may have to wait for news and he told me it would be some months.

SSDI decided not to have a psychologist review me as they felt the psychologist's report from my hospital records was enough.

With the state aid check of around two hundred and fifty dollars a month and about forty-seven dollars of food stamps awarded to me monthly as well, I was having to learn afresh how to budget myself and make things stretch. I remembered how I, as a child, walked out of the local drug store with a friend and we found a twenty dollar bill lying on the ground. Being at an innocent age, I picked it up and immediately turned it in to the drug store cashier for their lost & found. She smiled and laughed lightly and said not to worry about it and we could keep it. Back then five dollars seemed like a huge amount of money and four times that was unimaginable! My friend and I immediately bought another five dollars worth of candy and with another five bought a plastic bat and ball to play with. The remaining ten dollars we split, I don't know what he did with his, but I kept mine hidden away at home, saving it for some future prized item I was yet to find. Once I was employed and an adult, twenty dollars seemed a modest amount of money...

Now I was back to miserly tracking each dollar bill. Half of my state aid check went to pay my continuing COBRA health insurance coverage. The remaining half was used for gas money and medical co-payments. Having forty-seven dollars for a month's worth of food dramatically curtailed my diet and I was supplementing that out of my ever dwindling savings. Still, with no expectation of returning to work left in my life, I saw those precious few dollars as the last savings I'd ever have.

I decided to see some lawyers for a 'free consultation' about what the primary care doctor had done to me, had me take tests then discard the results to be replaced by his own imaginings of what the results should have been. Surely there was something that could be done about that? Of the two lawyers I saw about this they both expressed the general sentiment that, to sue for malpractice, one needed an obvious medical screw-up like a missing limb in order to win with a jury. They didn't feel they could do much with fictionalized records as the complaint. One of them ended the consultation by telling me I needed to drink lots of papaya juice. He himself had discovered papaya juice in his early adult years and it had maintained his health for his whole adult life. He felt that if I just drank enough papaya juice, all of my health issues would go away and I would be back to work & college in no time... The second lawyer said that my experience seemed more like a case of fraud and asked if I had gone to the District Attorney's office about it?

I went there next and when I explained what had happened to me, they assured me it would be more of a malpractice issue and I should look into getting some free consultations with lawyers out of the phone book. When I told them I had and one of them mentioning I should come here, the District Attorney's office assured me it was not the sort of thing they helped with.

As Christmas time approached, there was a new ad campaign on the local television stations for a 'Caring Help Hotline'. If there are problems in your life or you need advice or someone to talk to, our caring advisers are here to listen! At first I just ignored the ads as I would any other ad, but then I realized that maybe, just maybe, these were the people I needed to talk to. When I next saw the ad, I wrote down their phone number and held onto it for a few days debating whether or not to call.

Finally, one evening, I did. The guy that answered asked how he could help me. I told him of my health problems, the loss of my job and having to give up college, my discovery that my medical doctor had effectively faked his records and had been saying false things about me to other doctors despite never having any release forms to allow him to. That I had reached the end of my rope and couldn't see any chance at a future any more.

''stop wasting my time,'' I heard him mumble back at me.

I paused for a moment, not believing what I had just heard. Then I started, ''Wha-?''

''STOP WASTING MY TIME!'' he shouted back at me, then hung-up.

Click.

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Counseling Sessions

46

After the psychiatric nurse recommended I seek out the community mental health clinic for on going care, after a couple weeks of consideration, I did. The psychiatric nurse was the first person, beyond my mother nearly a decade earlier, that I had ever started to bring-up my 'situation' to. And yet while she didn't have any interest in it, I found that once I had opened that door, I wanted to continue talking about it... With someone.

And so I sought out the community mental health clinic and found their main branch location at the far end of town. When I got there and talked with them and found out their phone number for future visits, they noted that they had a branch location nearer to where I lived and set-up my first appointment there. It was based on a sliding scale and since my personal income was only a few hundred dollars of temporary state aid each month, I was able to get in and have appointments for a two dollar co-pay. So far, so good, I reflected.

'Stella Hernandez' was assigned as my counselor and we first had to get the elephant out of the room; within the first two weeks we discussed and she agreed that I didn't have any psychological eating disorder. Once that topic was out of the way, I thought we could now get to the subject of my strange puberty and I could gain some understanding and insight.

She explained to me how she had benefited a great deal from counseling herself and how she had wished she could continue with it even though her counselor finally decided one day that she no longer needed to come. But then it occurred to her to seek a job as a counselor herself, and then in this way she would be able to continue in counseling, albeit with the shoe on the other foot. Stella told me of the time she and her friends got to go on a trip to Spain, in their teenaged years, and visit the coast there. She told me of the job she had with a retired military boss who would only call her by her last name and how that hurt her feelings until she realized through counseling that he was just calling her by the last name as he called everyone else and it didn't mean anything personal.

I was initially very impressed with Stella and her technique of being the first to open up with me so, I assumed, I'd grow comfortable in the relationship and more easily open up to her. She told me many highlights of her childhood and the awkward moments during her teenaged years and of troubles finding her first job as an adult. By the end of the first five weeks, I found myself wanting to force my way, edgewise, into the continuous monologue about herself: So I could talk about 'me'.

It was then I began to realize what she had meant by her desire to continue with counseling, the only problem was I was now the one making the co-payment on her behalf.

By the sixth week I made sure to have the first word of the appointment before she could start talking at length about another aspect of her life. I said I wanted to talk about my gender issue and what it meant. She flat out told me how lucky I was to be legally male and not to worry about it because it made me 'so privileged in society'. In fact, she told me, I had never known discrimination in my life as a result of being deemed male and why would I want to open up that can of worms? I sat there incredulous for a time, apparently my gaping expression was enough to leave her speechless for a moment.

''So you're saying that me, as a stutterer with a mixed raced background, had never known discrimination in my life? That seems plausible to you?'' I responded.

She was flustered for a moment then clarified that being a woman was a whole new level of discrimination in society that would make anything else I had experienced pale in comparison. Be that as it may, I didn't know why that meant we shouldn't talk about my 'situation' and what might have caused it, what it meant, and what I could or should do about it. But the flood gates were open and she gave me examples of people thinking less of her because she was a woman, ultimately the examples didn't seem all that different from my own experiences, but our time was soon up.

When I arrived for my next appointment, she handed me a flyer for what I'll call the 'Gender Support Group' of Colorado. Glancing through the flyer it was apparently a support group for transsexuals and transvestites. By handing me the flyer, Stella had successfully kept me quiet enough that she could begin talking about her first husband. When I tried to ask her about the flyer and what it meant, she didn't want to lose track of the topic we were already discussing: Her husband.

By the eighth appointment, I arrived to find out it was check-point day and Stella quickly told me that I was to have an interview with her boss. I was ushered into a dark backroom office where a guy introduced himself, explained that his job was to get his own feeling about my case and then next week I'd be back seeing Stella again. He started off by noting how Stella had told him that I was so comfortable having her as my counselor as she reminded me of my mother. I burst out laughing and I said if she had reminded me of my mother I wouldn't have been caught dead seeing her. Her boss was taken aback, did I have issues with my mother? A bit, I returned. He was surprised Stella didn't know about that, but we have been talking about my gender issues, right? Not really, I answered, she's told me quite a bit about her own life. But that's just to get things going in the first week and you've been discussing your gender issues ever since...? No it's been nearly every week and I've found myself frustrated trying to get in a word about my issues during the appointments. Really? He commented as he made some notes. Yeah, I affirmed. So she told me that you wanted some medication. She did? I replied. You had talked with her about starting medication... he lead. No, I answered, what would it be for? You mean you haven't talked about it? The subject's never come up.

''Hum,'' he said as he made more notes and had a growing concern spreading across his face. That was the end of the appointment.

There were a few minutes left and Stella intercepted me in the waiting area as I was heading for the door, ''So that went well, then?''

I asked her what the whole medication thing was about and she looked nervous, ''You mean we hadn't talked about that?''

No, I answered and then I noted with a confused smile, ''And he said you thought you reminded me of my mother?''

''Don't I?'' she returned. Given that she physically bore no resemblance to my mother, nor in personality either, I said she didn't. ''You don't get along with your mother?'' she suddenly asked. I told her I didn't and she became wide-eyed as she thanked me and I was on my way.

When I arrived for the ninth appointment, I was first called into the financial aid office where they told me they had recently changed their standards, they would now need a full financial disclosure from my mother in order to figure what my adjusted co-payment would be since ''she was financially supporting me.'' I told them that, actually, I was more of a squatter in her home and she didn't give me a penny to help pay for anything, not even food. The financial aid people couldn't believe that and said the standard was now everyone living under 'one roof' must have their finances reviewed in order to determine what the appropriate co-payment would be.

When I affirmed that I wouldn't be able to get that sort of information from her, they just couldn't believe it. I then asked about the 'one roof' policy, did that mean that people living in an apartment building with one roof would have to provide all of their neighbors' financial statements in order to determine the co-payment of one tenant? ''Yes,'' was the answer I was given and I couldn't believe that.

Since I couldn't provide the level of financial paperwork they now required, my time with them had apparently come to an end. Just like that.

I was actually thankful for it.

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Denial

45

Once I had collected all of the medical records from the primary care doctor's office, as well as the hospital, I decided to write a letter to him asking why his narrative reports often said one thing about my health and the actual test results and hospital records said the opposite. I didn't expect any meaningful answer from him as I suspected he was beyond reason if, as part of his actions, he really had been the one to remove the pesky actual test results from my hospital file, not realizing the hospital could reprint them from their computer's memory...

Effectively finding myself doctor free, I decided to get a new doctor from the phone book. Rather than starting from scratch with another primary doctor, I noticed there were listings for 'Gastroenterologists' and I picked one at random, I'll call him 'Dr. Tanaka'. I don't remember where I had first gotten the term gastroenterologist from but I found it was the type of doctor for intestinal issues and it seemed to me that I had some sort of intestinal disorder causing my weight loss. So I was off to see him and brought a copy of my medical test results and hospital records with me, but none of the primary doctor's narratives.

When I arrived he was tickled as new patients to him often came from their primary doctor's offices and he would have received a narrative report of what the issue was. I told him I didn't have a primary doctor anymore without going into the details but could provide him test results and hospital records. Before seeing those, he asked me what the issue was and I explained the several years of unexplained weight loss and the dietary survey and hospital stay which confirmed that I had been eating more than enough calories to gain weight, but still lost. He decided to take my record copies and he'd look through them and I could return the following week for his thoughts.

The following week he had an urge to do a physical examination of me and I was caught off guard for fear my first experience of a physical examination happening again. But he was professional about it and seemed to do more than just look at me and run out of the room. He even went in search of a missing testicle and hunted for it above my pubic bone until he had discovered it a few inches higher up. Once done, he had me get dressed and meet him in his office.

He had looked through the records and decided there was nothing he could do for me. When I asked him if he was going to at least do some more tests of his own before concluding that, he said he wasn't, he didn't see any need to. When I asked him what he thought was causing the weight loss, he instead asked how the psychiatric nurse visits were going. As I hadn't mentioned her to him, I realized that while I hadn't given him any of the primary doctor's narrative notes, he must have gotten his name off of the test result pages and/or the hospital records and had been talking to him even though I had never been asked to sign a release allowing it. I answered truthfully that I had been told the psychologist who reviewed me didn't support the primary doctor's diagnosis of a psychological eating disorder and that I was no longer seeing the psychiatric nurse.

He felt there was nothing medical that 'could' be found 'if looked into', and he wasn't going bother. As a challenge to him I asked if that meant he didn't think he'd be able to find what the physical problem was, and he retorted that even if I went to what I'll call 'Premier Medical Center' in Denver, they couldn't find any organic cause of my weight loss. Premier Medical Center? I asked. It turned out to be one of the best and brightest medical centers in the state and as a teaching hospital they were at the cutting edge of medical technology and understanding... So he told me.

I decided to make an appointment with them and was soon on my way up to Denver to find their complex and have an initial visit with one of their gastroenterologists. I'll call him 'Dr. Donalds'. I brought more copies of my previous tests and hospital records, but he wasn't interested in those, instead wanting to figure things out on his own. After I told him of the unexplained weight loss and even the problem with corn syrup he told me that corn syrup was part of a 'Fructose Intolerance' problem and I should avoid fruit, as well, as its sugar is also fructose; it was a rare disorder that had been coming more to light as the food industry had been replacing regular sugar with corn syrup. But he felt that wouldn't alone explain the weight loss and wanted me to return early the following week for a first of the morning urine test and then a near day long Triolein Breath Test to see if I was able to digest fat in food.

As they needed a first in the morning urine sample, that meant I couldn't 'go' until I was at the Center, which was awkward as I would usually 'go' before doing anything else in the morning. Instead I had to keep it as I took my morning shower, got dressed, then took the hour drive to Denver, slowed down to an hour and a half given early morning rush hour traffic. Then I had to maneuver through the twisting hallways of the medical complex, wait for the lab's receptionist to get on duty, I was the third in line already for that, get checked in and then wait until the only lab technician had finished or gotten the first two patients underway in their tests before calling my name and was handed a cup. About two and half hours after getting up that morning, I finally had my first of the morning urine 'sample' out of me and I was feeling much more comfortable.

The breath test was on another floor higher up in the building and I arrived to wait in a longer line as PMC was now entering regular hours and more patients had arrived. Once I checked in, they gave me the testing 'kit' as it were. It was a small tube of thick white stuff I was supposed to swallow and then a cage of little plastic test tubes half filled with liquid that I was supposed to blow into using a small, coffee stirrer type, straw. I think it was about once every half hour I did this, until the fluid in each test tube changed in color. I remember there were about eight tubes and so that gave me four hours more to be at the hospital until I could go home. They guided me to the waiting room and I began the test, blowing into the first few of the tubes wasn't a problem, but it seemed that each subsequent tube needed twice as much breath until its color would change. Thankfully before the age of droning televisions in waiting rooms, I could entertain myself by looking through their selection of year old magazines or staring out the window and seeing my car parked in the parking lot down below and the various other patients as they arrived and walked into the building, or out from under to find their car in the parking lot and go home.

Given that I had little sleep as I had to be up early enough for these tests, with the driving time factored in, I was dead on my feet and ready to get home and go back to bed by the last hour of the test. But by this time I was having to blow into the second to last tube for around ten solid minutes before it changed color... The last tube was about twenty minutes of endlessly blowing and about halfway through I was ready to pass-out. Still I kept at it and it eventually started to change color. While I had begun that particular test with a sense of curiosity, I was so glad to finally be through with it and turned it in to the lab for processing.  After a cursory check of the tubes, I guess to make sure they had all truly changed in color, I was allowed to go home. I instead went to the parking lot, lowered the car seat back and slept for a good hour or two before I felt refreshed enough to drive through Denver traffic and get home safely.

When I returned to see Dr. Donalds about my tests, he told me that I was concentrating my urine normally so there wasn't an issue there, but I did have a fat malabsorption problem and I was to return to my local gastroenterologist to get follow-up treatment for it. After years of wanting a doctor to look into my unexplained weight loss, I was thrilled that I now had two diagnoses that shed some light on the issue and I could finally get better.

But when I told Dr. Tanaka of the 'Fructose Intolerance' and 'Fat Malabsorption' findings he flat out didn't believe them, even going so far as making fun of the Triolein Breath Test as if it were new-agey pseudo-science that wasn't trustworthy. When I asked him what test he would trust to verify a fat malabsorption issue, he thought for a bit then said a 'Qualitative Fat Analysis' . Heady with my new diagnostic labels and not wanting to lose one, I said, ''Let's do it.''

It turned out a Qualitative Fat Analysis was collecting all of your bowel movements into a bucket for a few days in a row, then turning it into a lab for review. Fortunately the bucket had a lid for the in-between times, unfortunately you had to take it off and then figure out how to 'go into it' while ignoring the smell. Particularly challenging if you're having bowel problems to begin with... But it was finally done and I turned it into the local hospital's lab. I called Dr. Tanaka's office and let them know and made the follow-up appointment.

Before going to see him again, I had learned from my recent doctor experiences and requested a copy of the test results a few days later directly from the hospital's records department. When I arrived at Dr. Tanaka's office we discussed the results, my own copy in hand. It showed that I was 'passing' three times as much undigested fat in my stool than the normal high level. The results confirmed the fat malabsorption, in my eyes, and I asked him how we treated it. He told me he wouldn't: He felt the Qualitative Fat Analysis results couldn't be trusted. I asked him why not and he answered ''Because I already know your weight loss can't be organic in nature.'' How? He just knew, he responded.

He then offered to do exploratory surgery on me. Why? Would it help us figure out my weight loss? ''Oh, it might shed some light on that, too,'' he answered, leaving me with the clear impression it was other things he wanted to look at from the inside. I turned down this offer and left his office.

With little other choice, I decided to return to Premier Medical Center to see if I could get my follow-up treatment there. Seeing Dr. Donalds again, he asked why I was back. I told him that the local gastroenterologist refused to treat me because he didn't believe their findings. I even told him of the subsequent Qualitative Fat Analysis test and gave him a copy of the result sheet affirming their findings. Dr. Donalds asked what I wanted from him? I was a bit surprised and told him to be treated for my health issues. He explained to me that their role was to diagnose issues, not to provide on going treatment so he wasn't going to help me. I asked what I should do then and he said it wasn't his concern. But who was going to treat me for my Fat Malabsorption issue? He told me that, unless I subsequently tested positive for A.I.D.S, it wouldn't be him...

What was that supposed to mean? I wondered on the drive home. As I didn't have any risk factors for A.I.D.S, was that a clever way of him saying he would never treat me? Or was he hinting that I should go out and get myself somehow infected in order to curry his favor and in return he would then treat me for my weight loss issues... It wasn't like he was an A.I.D.S doctor so I wouldn't have seen him for that, I assumed. I just couldn't fathom my position of finally having diagnostic findings to go with my weight loss, but now not being able to find a doctor who would treat me for them...

When I arrived back at my mother's mobile home, I was stupefied to find all of my belongings, that weren't locked up in my bedroom, had been put out with the trash. Had I gotten home an hour or so later, the trash company would have already come and I would have lost them without knowing what had happened to them. I quickly gathered them up and took them inside, then concluded I'd now have to keep everything of mine in the bedroom at all times from now on. Apparently my mother's pledge to help me through this issue until it was taken care of was only good for two months; now she apparently wanted me out of her home. From that point forward, I stayed in my bedroom when she was home, and would only spend time in the rest of the mobile home when she was asleep or at work. To encourage me to leave, she took up pounding on my bedroom door late at night as part of her bathroom breaks, or other times when she was passing by during the daytime hours.

As the first copy was free at Dr. Tanaka's office, I requested a copy of my records and I got a call that they were ready. When I went to pick them up, the receptionist asked me if I had been on a special diet when taking the Qualitative Fat Analysis test, like putting lots of butter on toast in the morning. No, the doctor hadn't mentioned I needed to be on any special diet for it. Handing me the envelope of records she spat out at me, ''Oh, yes you did!'' And fled to the back room before I could respond. I stood there for a while waiting for her to come back so I could affirm I hadn't, but after ten minutes I didn't see the point.

Before the end of the year, I got a response back from my mother's primary care doctor concerning my letter about his systematically ignoring my test results and hospital records and making up his own numbers. He said that he had found that I did not have a physical cause for my weight loss. He then repeated that he did find that I did have a physical cause for my weight loss. This left me wondering if he intentionally had both sentences in there to cover himself should it be subsequently confirmed that I had real health issues, then he could claim the first sentence had been the one mistyped?

Regardless, I reached the end of his letter where he definitively stated that I did have a psychological eating disorder 'of some sort', though he couldn't say which. He didn't address my comment that those in the psychological field didn't support that. He then further responded to my letter by sending me a bill for the copy of the medical records I had gotten from his office. Apparently the first copy was only free until someone questioned his diagnoses, then one was retroactively billed for it.

I ignored the bill and the following year he sent it off to a local collection agency. It seems he didn't have confidence that the collection agency would follow it up if he said it was for medical record copies and instead told them it was for appointments that I hadn't co-paid for. That was a mistake on his part as I was able to go to the collection agency with my insurance payment listings and my canceled checks and proved that for every appointment he had charged my insurance for, I had made the co-payments and they had cleared. The collection agency duly agreed and rejected to honor the primary doctor's collections request, returning it to his office as 'unproved'.

At least I had won a little battle against him, in the end.

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