Paperwork

41

As there was no apparent quick fix for my health, there was no reasonable expectation to return to work. Yet student loan bills had to be paid as well as COBRA health insurance premiums. After visiting some local resource counseling groups, I found I could file to temporarily suspend my student loan payments due to health issues, as well as file for the state's aid program to receive a short term monthly stipend which would cover my insurance payments and a few other expenses. I went to my mother's primary care doctor and he was willing to fill out the paperwork for both and then reminded me of my up coming appointments with the nutritionist and psychiatric nurse.

I mailed in the paperwork and then went home for the couple of days until my first of the appointments. I was continuing to eat as if I had a full-time job, but as I didn't my savings were quickly dwindling, and due to medical bills as well. At my mother's mobile home I at least had a room, heat, and water, but little else. By the end of the month I would look into the Food Stamp program and by the time the first of the state aid checks arrived, I was also receiving a partial allotment of food stamps to minimally keep me fed. Rather than ever increasing my food intake as the doctor repeatedly advised, the financial crunch made maintaining my current diet highly unlikely.

When the dietician's appointment came, I had to go to the hospital and wend through a maze of disused hallways to find her office stuffed into a dimly lit closet in the oldest part of the hospital. Apparently the system hadn't accepted the nutritionists' role as a high profile need at the time and it definitely didn't help with first impressions. Still, given that my stuttering didn't help with first impressions, I felt we were at an equal footing as I introduced myself and she welcomed me to sit by her desk. Looking over her notes, she said the doctor had told her that I had been losing weight by simply not eating enough food, as confirmed by my recent hospital stay, as well as the preceding dietary survey which showed I had a grossly substandard calorie intake, barely adequate protein intake and even suffered from a folic acid deficiency. That last one surprised her as she hadn't realized the dietary survey system measured folic acid intake levels.

Regardless, she provided me the standard diet that she presented to all patients and we went through it step by step. I was frustrated as it seemed like a lot less food than I had been eating during the past few years. She assured me it would be plenty of calories to get me building up my weight and then we would adjust it to smaller portions once I reached a reasonable weight level. As for the folic acid bit, she actually wasn't sure what foods would be a good source of folic acid. I noted that apparently the dietary survey kept track of that and perhaps we could refer to it. She thought that was a great suggestion and left the office to get a copy.

Minutes turned to nearly an hour and I was starting to think this was another example of the medical profession: That my appointment was over and I was to figure out on my own that it was time to leave. I started to put my coat on and gather my things when she returned, apparently without a following appointment on her books she felt she had plenty of time to get things sorted. She apologized for the delay and looked frazzled and worried. She told me that when she had gone to my file, all of my testing result sheets and lab work were gone, leaving only copies of the doctor's narrative reports. This lead her to notify the records department of the missing pages and, as tests and other lab work were retained on their computers for a period of months before being purged, they would be able to reprint them and put them back into my file. She had then gone straight to the lab wing that had processed my dietary survey and had them reprint it and asked if they could list from their records which foods were high in folic acid. What they told her was that their system didn't yet track folic acid levels in most foods and any result it gave on it was invalid. Sure enough, looking at the resulting report, for most everything I ate there was just a dash in the folic acid column, no meaningful value.

But there was something more confusing and disturbing to her. My dietary survey showed that I had been averaging three thousand calories a day, had a protein intake of one hundred and eighty percent of what I needed as well as showing a healthy excess in the many other levels it tallied. She couldn't imagine how the doctor had gotten it so wrong. If I had been losing weight on my recorded diet, then I'd have to eat double the portions of every meal she was recommending to me to expect to gain any weight...

For the first time hearing any feedback that corresponded with my own experiences, I asked if I could have a copy of the dietary survey results for myself. She handed me the one just reprinted and said she'd get another copy made for her records. I asked if it would be possible to get a copy of my hospital file as well. She said I could but, given the time needed to reprint the various testing results, I should wait about a week before asking. On the way out she showed me the patient records office that I would go to when I came back to make the request.

It was a week to wait to make the request and another week for them to photocopy my whole restored file before I was able to go to the hospital and pick it up. In the meantime I'd have three visits with the psychiatric nurse.

By the end of the year I received notice from the student loan people that my loans had been terminated. This surprised me and I called them up to ask what that was about? They told me they had processed the request to terminate my student loans due to health reasons and they had agreed with the doctor's determination that I would never be able to return to work. As I had reviewed the paperwork myself before sending it in I told them it had been a 'temporary' suspension of payments request, not a permanent disability notice. But as far as they were concerned, the computer said it had been processed as a permanent disability notice, it was approved, and thus the loans were gone. There was no review process so I didn't need to worry about it.

As I got off the phone, I was astounded as I just had a huge stroke of luck. But it was little solace as I finally got my hospital records and reviewed them to conclude that my mother's primary care physician must be insane.

I was off to the psychiatric nurse to be treated for it.

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Hospital Days

40

Knowing I'd be in the hospital for a few days, I asked Jeff if I could borrow his disused laptop to keep myself occupied. He agreed. It only had a single floppy drive for storage, but that wouldn't be a problem as I only wanted to use it to write up some new stuff. After the disappointment with the local PBS station collecting money to continue showing Doctor Who, then keeping the money and dropping the show, I decided to do something about it. Given the names of those who contacted me to volunteer on pledge night, plus those I knew in the local science fiction club who liked Doctor Who, I decided I was going to create a Doctor Who focused newsletter: 'The Doctor Who Report', I'll call it, TDWR. My slack time at the hospital would be devoted to creating a template with sample articles for it and, to help fill it out, I'd use it as a platform to pull out one of my many Doctor Who story ideas and write it up and serialize it over a few issues.

But ultimately that wasn't why I was at the hospital...

Before my stay, my mother's primary doctor wanted me to have a Glucose Tolerance Test. The lab had me drink a soda pop like bottle of orange drink and then sampled my blood about every fifteen minutes for two hours. By the last half hour of it I was shaky and they could no longer find a good vein to draw blood from and eventually had to get my last samples from my feet. When I saw the doctor about the results, he told me that the test had actually showed that I was better able to metabolize the glucose as my system had cleared it out of my blood stream in little over an hour and a half rather than the typical two hours. He asked if I still wanted to do the hospital stay and, as the Glucose Tolerance Test hadn't apparently shed any light on my weight loss issues, I said ''Yes.''

I was scheduled to arrive first thing Monday morning where they checked me in, weighed me, and I changed into comfortable clothing for the stay. The nurse interviewed me as she filled out the intake forms and then I was left to settle on the bed and wait. It was already too late to get a breakfast for the day and I spent a little time flipping though the handful of over the air broadcast channels on the room's T.V.. Then I dozed off for a little nap until the doctor arrived to tell me of the plans: I would be eating a monitored diet and they would be collecting everything on the way out as well as taking blood tests. There would be some other things happening as well and I'd find out about them as they came.

All seemed clear and he was on his way to the next room. I pulled out the laptop and started fleshing out what TDWR would look like: Publishing information page, check, Table of contents page, check, Front cover and Back cover, check... I had four pages already planned out for each issue! Spending time with the science fiction groups I had seen various formats of newsletters, all photocopier based. They generally fell into either lose sheets stapled at the top left corner, or folded sheets stapled at the fold to make a little magazine-like booklet. I thought the latter looked spiffier and it would save on publishing costs as I could use the photocopier to reduce the size of the master pages to fit in the exposed leaf of each eight and a half inch by eleven folded sheet. Effectively I'd get twice as many pages with the same number of sheets and, as I wouldn't really be fully reducing the size of the text so each leaf would fit the same content as a full sheet, I'd be able to make my content span more pages with less scrounging for submissions.

After lunch was served, I was visited by another doctor who wanted to chat with me. He asked why I was here and I told him of my history of unexplained weight loss and he asked about my background and came to the question of 'had I ever heard disembodied voices in my head?' I told him I did. He paused for a moment and asked me to explain. I mentioned that sometimes when I'd be writing a story and I was really into it, it'd be like just hearing the characters talking in my head while I simply transcribed what was said. He asked if I'd been writing for a while and I said for a few years and even showed him the rough-out I was doing for the newsletter. He seemed to be comforted by this and back at ease. A few years later, I'd realized I had ducked a major bullet as he could have just not asked for any follow-up detail and summarily labeled me schizophrenic and thrown away the key, as it were.

He asked if there was anything in my life that had left me feeling badly or uncomfortable. While I didn't mention my strange puberty, I did note that when my teen years came I found myself more comfortable seeking friends who were older than me and shared similar interests, than spending time with my peers who had become more focused on dating. He noted this down in his report as a 'possible adjustment disorder' but otherwise gave me a clean mental bill of health. This was when I realized he was a psychologist and not just someone in my room for a chat. My tummy was starting to grumble painfully and I asked if there was anything else, he didn't think so and we parted ways.

And I went straight to the room's bathroom and used it. When being introduced to the room, the nurse had pointed out that the toilet had two plastic pans inserted into it, one for poo, and one for pee and I was to make sure I didn't get the two mixed up. I did the best I could over a long period of abdominal pain and associated 'output', and then hobbled back to my bed to lay down and press the nurse call button. It was the worst time I had to that point going to the bathroom and wondered what had triggered it. When she arrived she guessed on her own why she had been called, perhaps I should have closed the bathroom door once I had been done. Output taken and new collection pans put in place, I was left to recuperate after my bout. I dozed off.

I was awoken as it was time for dinner and my mother came to visit me once she had finished with her shift. She soon left and after dinner was done, I was surprised by how little they were having me eat. I asked if I could have more, but as my diet was pre-planned there wasn't any latitude. I pulled-out the laptop and began clicking away on a sample opinion piece to close out the sample newsletter.

I had more gurgles again, but this time far less output. While the nurse came to collect, I crawled back into bed wondering what the heck they were feeding me to be causing such diarrhea. But I consoled myself it was all part of the 'monitoring' I was receiving and watched a little television before dozing off for the night. The second and third days were much the same, day two was for blood testing and a visit from my friend Jeff.

Day three was for a C.T. scan of the brain in search of a brain tumor that would explain my weight loss, how a brain tumor could make the body not absorb food, I didn't understand, but it was all part of the plan, I assumed. For the C.T. scan I had to remove my ear studs and after one pass, they gave me an I.V. of 'contrast dye'. It turned out I started to have a bad reaction to it by the time they were taking me back to the room: Red rashes covering my skin, profound weakness and tremors. Fortunately they were wheeling me back up to the room anyhow but, once we got there, they had to get staff to help me out of the wheel chair and back into the bed. They placed a small cup in my lap which had my ear studs in them and when I tried to put them in my hands were too stiff and shaky to handle them and I asked the nurse who was leaving if she could put them back in for me. She did, then left to call my doctor to find out what to do about my reaction to the dye.

He concluded just to have me remain in the hospital for another night of observation, then I'd be discharged in the morning rather than this evening. After a few hours the red patches faded and the shakiness & weakness subsided enough that I could handle the laptop and finish plotting out the newsletter to further include a news section and then a fiction piece, fitted in before the final opinion piece. Feeling I had a good handle on it, I called it a night.

The next morning the doctor came in and revealed to me that they had been adding corn syrup to every meal and I hadn't had any bad reaction to it. I brought up the abdominal pains and bouts of diarrhea and he assured me I hadn't had any of that. He had talked to my mother and found that I hadn't been eating any of her cooking in years and that was the cause of my weight loss. I just had to eat her cooking and I'd be fine. This was jaw-dropping as my mother hadn't prepared a meal for me since I was ten years old. My subsequent guess was, when the doctor asked her if I ate what she made for me, rather that say she hadn't made anything for me and appear as a bad mother, she covered her ass by replying that I hadn't eaten anything she had cooked, without clarifying that anything she did cook wasn't for me.

The doctor then pointed out that since they had been weighing me each day, I had actually gained weight during my stay at the hospital, proving that it was simply a case of me not eating enough food. He had scheduled me for another test just to be complete as well as a follow-up with the hospital dietician, who would explain to me how to eat properly from now on, as well as a series of appointments with a Psychiatric Nurse who would also be 'helping me'.

I was dumbfounded as I was left to dress and collect my things to go home.

The follow-up test was a 'barium enema' which required me to have an empty colon. It had been scheduled for later but had I known, after all the bouts of diarrhea, I could have taken it while at the hospital. Still, I did as I was told and got ready for the test. I arrived back at the hospital and was told the steps of the procedure: I would be placed on my side on a table, when they were ready for the test they would give me an injection of glucagon to reduce any discomfort I may have, pointing out the syringe to me on a small tray near by, they would then fill my colon with barium and air and have me pose in different positions while they took x-rays. After a bit, the guy in charge came and inserted the tube and went to work. It was profoundly painful and once they were done I was left lying on the table, staring at the unused syringe still on the nearby tray. The nurse told me I could use the adjoining restroom if I needed ''to empty myself'' and then get dressed and go home. But with the pain and the shakes I just remained on the cold steel table that was actually feeling warmer than I did.

The nurse returned after a while to find me still lying there shivering and told me I had to get dressed and leave. When I tried to get off the table as prompted I collapsed to the floor and the nurse had to struggle to get me back up to my feet and to the restroom where I sat on the toilet for a long time, then struggled to get on my clothes. Out of the bathroom, I fell to my knees and the nurse had to again help me back up to my feet and lead me to the hallway. She pointed out that I could use the hand railing along the walls on my way to the parking garage. I did but, once I reached the door out, I had to wait until I felt I had enough energy and balance to get to the car. Finally, I made it and drove myself back to my mother's mobile home but found I was too weak to leave the car at that moment and lay my head on the steering wheel and took a short nap. Coming to with my body again quaking from the cooling car in the fall weather, I got out and made my way to the door, let himself in, then hugged the walls as I made my way to my bedroom to then collapse on top of the bed and sleep the rest of the day away.

Now that was a day I had ended up eating very little.

The following morning, after my mother had gone to work, I got myself up and then made my way to the bathroom and emptied out what was left of the test from my colon. Before taking a shower to clean myself up and get into fresh clothes, I weighed myself and found I was at the lowest adult weight I had ever been at in my life, about the same I had weighed when I was twelve years old.

After my shower, I got dressed and simply collapsed back onto the bed. It wasn't until the middle of the afternoon that I felt strong enough to get up and order my first delivery pizza of the day.

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so

iii

This would be the perfect point for me to end a blog and tell you to hunt down and buy the book as the truly disturbing part of my life is about to unfold...

But I'm not going to do it as I suspect you either have bought the book already or you can't afford it. Being someone who's had trouble making ends meet from time to time over my life I was grateful when I didn't have to pay for something I wanted. And as you must really want to find out what happened to me over the course of my life if you've made it this far, then I won't disappoint you...

Except for the quality of my writing, and the lameness of the plot.

But except for that, you won't be disappointed...!

Unless you lose your connectivity halfway through reading one of the upcoming segments...

Okay, I guess what I'm trying to say is at some point, regardless if you buy the book or finish reading this on the blog, you will be disappointed.

Yes, that's the ultimate truth of life, isn't it?

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The Decline And Fall

39

By my twenty-third birthday I knew I wasn't going to be able to continue with the way things were going. My weight had somehow continued to decline and by this time it was clearly eating into my muscle tissue as I was now having to struggle to lift and place a single gallon of milk from a create into the display case while working at the grocery store. Further, I had finally become a target of politics in the store and I knew I needed to be ready to find a new job, which was not something I could do with continued declining health. I had avoided my mother's primary care physician since the strange 'physical examination' I had with him but I needed my health addressed now and I didn't know who else to go to.

Making an appointment to see him, I arrived at the office a couple days later. He made no mention of the physical examination and I decided to let sleeping dogs lie and not bring it up either. When he asked me what I was there for I flat out told him that I needed the endless weight loss addressed now as it was significantly impacting my ability to do my job. He again felt that all I needed to do was just eat more and more and I told him I couldn't imagine eating more than I already was. So he scheduled me for a seventy-two hour dietary survey. Effectively I was given blank log sheets to jot down my food intake over a three day period then turn it into the hospital lab where they would have a computer crunch the numbers and tally the results 'objectively stating' how well I was doing with my nutrition.

I filled it out and turned it in and waited a week for it to be processed. As I did, I relied on a new trick I had figured out during the Summer to keep me going at work. I had been dragging through my work days for months and one time I was startled by a coworker, I got that burst of adrenaline and it helped me get through the next hour of work. I thought to myself that perhaps I just needed to get startled more often to get through each day. But how could I do that on purpose? It occurred to me to imagine being on foot and chased down by a car. I tried and it didn't work, then I tried so more vividly and boom, I got that burst of energy. So by August I was relying on this trick a couple of times each day just to keep me on my feet and plugging away during my work hours. Then I'd get home and take a nap before I felt revived enough to do any personal tasks with the remaining part of the day. Even my regular visits to Jeff's house had to wain away to once or twice a week as I simply didn't have the energy anymore and needed more time resting in bed.

When I returned to the doctor's office to find out about the results of the dietary survey, he told me that it had confirmed I hadn't been eating enough during the day and I just had to eat a lot more food. I was gobsmacked as I couldn't believe this and went home wondering if this meant rather than eating one whole pizza a day I should start to eat two, or three? Full steak dinners three times a day? I had years of people being amazed by how much I could pack away compared to them. They would have the burrito meal at a Mexican restaurant while I would have the combination platter, with appetizer and fried ice cream for desert. How the heck was I going to eat more and how, in reflection, was I going to be able to afford it?

After trying to eat twice as much food for two weeks, pooing was starting to hurt all the time from the shear quantity going out. Even sitting and laying down were starting to hurt as my bones had little more to cushion them than blood vessels and nerve tissue. I returned to the doctor and insisted that we needed to assess what was going on and how to fix it. When we talked about my diet, he learned that I was drinking diet soda and it was like an epiphany to him: That was why I was losing weight! He told me I should only be drinking sugared sodas. I told him of the previous year when the emergency room doctor found that my blood pressure was spiking with my intake of regular soda and had suspected it was because of the industry change to corn sweetener. That doctor had told me to avoid corn sweetened soda and, sure enough, I hadn't had any blood pressure spikes since, nor sudden headaches as I had been having for years. The primary doctor scoffed saying it was impossible for anyone to have an adverse reaction to corn syrup and I should start eating as much of it as I could to help maintain my weight.

This time I was not going to leave his office with what seemed to me to be more dubious advice and I assured him I did have an adverse reaction to corn syrup and we needed to find out what was wrong and why I was losing weight regardless of how much I ate.

He had me go out to the waiting area for a while as he saw some other patients and thought it over, then he called me back in with a game plan. He would check me into the hospital for a few days and have me on a pre-planned & monitored diet. Everything going in would be recorded and everything going out would be recorded, too. I would have some additional tests during those days and by the end of next week it would become clear what the cause of my weight loss was. I agreed and then pointed out I'd need a note for the time off from work. He agreed and I went straight from the doctor's office to turn in the note at work and let them know I'd have to be out indefinitely while my doctor performed some tests on me at the hospital.

I then went home and, as my mother was there and in a receptive mood, I told her of my weight loss of the past few years and the toll it had taken on me. That I would be out of work while the doctor had me checked into the hospital for tests to discover what was going wrong. My mother was surprisingly supportive and told me that she would be there for me and help me get through this time.

Nothing turns out the way you think it will.

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