Stability Brings a Monster Out of Hiding

1994 was a continuation of what had been set into place. Occupational Therapy, Speech Therapy, Physical therapy for B. S was 4 and we placed him into a Pre School program. Having S in school from 9 to 2 gave me the time I needed to focus on B’s therapy without feeling like I was taking something important from S.

In February of 1994 my neurologist decided that maybe prednisone wasn’t as good of a treatment as he’d hoped it bed. It had caused severe acne, significant weight gain and moodiness. So, he started to taper my 100 mgs a day down. We tried going down 5 mgs every 4 days, but I wound up with disabling headaches. While most people get headaches going ON prednisone, a small portion of the population, usually those with existing migraine disease, will respond with the headache on the decline. So, the only option was to slowly taper. Instead of going down several mgs then waiting a few days going down several more, he had me go down 1 MG per day. If a headache happened, I was to go back to the previous days dose and wait 3 days and start my 1 MG a day taper. It sounds easy. It wasn’t, it meant constant attention to the day of the week, the amount I’d taken the day before and the amount that I’d be on the next day. It also meant 80 days, at bare minimum before I’d be off the prednisone. A full 20 days longer than if I’d have been able to go down 1 mg at a time. With headaches complicating, it actually took me 3 months to fully withdraw from Prednisone.

In April, I started my spring routine of walking. Also noting that the prednisone lower dose did not quite cause the hunger that the higher dose did and I started to remove foods from my diet. First to go, was always ice cream. Then I’d remove any dessert or sweet food. By the end of April, I was walking a mile a day (twice as far as my neurologist had ok’d) and my diet was becoming more and more restrictive.

By Mother’s Day, I only had 3 doses left to go. My husband BBQ’d chicken and made broccoli and baked potatoes. I can remember staring at the baked potato as if it would poison me. The butter and sour cream seemed to be taunting me. I ate the dinner because I had no way of getting out of it. D took the boys for a walk to give me a few minutes to lay down. My ‘laying down’ was a ruse to get into the bathroom without being caught. I went into the bathroom and purged the dinner my husband had taken so much care to make for me.

When I came out of the bathroom, our car was gone. D had evidently taken he boys somewhere. A little while later, they came in with balloons, a card, some candy and a cake. While it should have been a moment than any mother would love, and I was able to hide my panic and, in truth, disgust, and hug the boys and smile and say thank you. The balloons and card made it easier to cover the fear that was rising up in me. My husband opened the candy box and I quickly passed it around. The boys and he each took on and I put the lid on. S noted I’d not taken one. I sat down and stared at the candy. Claiming I was trying to figure out which had no nuts.

Finally when the boys could not take the suspense any more, I picked a candy and then let them have another. This distracted them enough for me to put my piece back in the box. D brought in cake for each of us and once again I had no way of getting out of it. I ate the cake then immediately said I needed to take a bath to relax. I went into the back bathroom and ran the water for a bath, and while it was running (and the door locked) I purged the cake as well.

I climbed into the tub … numb from the stress of realizing that food was once again something that I not only tried to control and avoid, but that it had become terrifying to me. Something to fear. I knew that each morsel that I put into my mouth might provide bits of protein, vitamins, minerals that my body needed, but it provided fat, sugar and all the things that had aided prednisone in putting such massive amounts of weight onto me.

The Friday after Mother’s Day, I went to the grocery store and to pick up some meds. As I was standing in line I saw Dexatrim. I’d not used them in years, but I remember they worked well. I picked up a box, and then saw the pink pills that had caused so much misery but made me feel so good when the misery was over … Correctol. I went home with groceries, my sons inhaler, my other sons allergy medicine and my laxatives and diet pills.

I was going to take them as directed. I did, for the first day. The next day, I took 2 instead of 1. The following day, 3 instead of 1.

The end of May I went into the neuro to follow up on the going off prednisone. He noted two things. I’d lost 20 pounds in just the few weeks since I’d gone off prednisone (he thought that was good) and that I had developed a slight tremor. It wasn’t a true tremor, but shaking as a result of the diet pills. I let him believe that it was a tremor, of coarse. I have often wondered if the tremor that I deal with now is purely genetic or cause of disease process, or did the diet pills start it and my body was never able to stop. The neurologist, years later after learning my full history, says that since the blood pressure meds help, it’s likely purely genetic. But just like I wonder if my sons issues are a result of a mother who damaged her body , the thought of the tremors being self induced will always be there.

As June arrived, the pool opened. Since the MG felt normal in the pool, we went daily. I would take the boys for 3 to 4 hours a day, while I swam until the boys needed a nap. Swimming lap after lap and not playing with the boys as I’d done in previous years. I usually had my teenaged niece with me, so she kept an eye on them. They’d manage to distract me for short time periods, but most of those hours were spent swimming laps.

I’d go home and crash. The MG reacting to the punishment I’d dealt out. I’d fix dinner for the family, then claim fatigue (well, it WAS fatigue, but not my true motive) and lay down until 10 pm or so. At this point, I’d go out and walk a mile. (again, 2 times as far as neuro had approved, and he did not know about the swimming).

Mid July, I went back into see the neurologist. I was darkly tanned (was supposed to avoid the sun with the Imuran I was on) and almost 30 pounds down. He told me that he’d never seen anyone take prednisone weight off as fast as it came on. Gave me some hints to protect myself … potassium, protein, all the things I’d already known, but couldn’t have cared less about.

My days were spent with exercising when I could, taking diet pills, avoiding food if I could possibly, and purging if I could not. I’d promised my neurologist that I’d come up with a method of keeping track of what I was eating. He meant it for health reasons. I took it to the extreme.

I made a chart … and then made copies and daily I recorded every single calorie that went into my mouth. Every fat gram. Every morsel was recorded for me to see (and punish myself with if I went over my ‘goal’). My weight was recorded on the chart 3 times a day, when I got up, at lunch and at bedtime. What it said, was a clear indicator on how good of a person I was or was not.

The chart looked roughly like this

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Time    Food           Amount         Calorie      Fat grams      Cholesterol      Weight Success      (1-10)
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Total Calorie intake:                 Total Fat Intake :                    Weight: Daily Success (1-10)
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It took a whole page, and if my weight went up, the success rate went down. If the food intake was less than I’d planned the success went up. If I managed to go on zero calories, I gave myself a 10, but if I’d gained weight then that was decreased to a 5.



This whole process of recording calories and food intake and how much I weighed and how it made me feel filled my days. If I was not taking B to therapies or working with him. If I was not taking Samuel to the doctor (because they both continued to get ill during this time) then I was focused on how I was going to avoid eating the next meal or eat as little as I could get away with it.

By November, I was allowing myself to eat chicken, bread, tomato (in all it’s forms), lean beef, vegetables of all types, limited fruit, dairy products and eggs. I was purging on almost a daily basis, at least 5 times a week, but usually every day. I had foods I would NOT eat ,and foods that I'd only eat if I could find a way to purge. Food and weight had become my focus. I was determined to get off ALL the weight the prednisone had put on, regardless of the price I had to pay.






In December, I woke up, and went to get out of bed with the intent of going to weigh myself. My legs gave out from under me. D jumped up, called the neurologist and my sister in law, niece and husband got me dressed and taken into his office. I was severely weakened and having trouble breathing. He admitted me to the hospital to start prednisone again. He said it’d just be a couple of days to stabilize me. When they checked me in and weighed me, I was 85 pounds less than I’d been in May when the Prednisone was ended. I was angry. 85 pounds in 6 months … and I still had more to go and they were giving me this drug again that would undo all I’d managed to accomplish.

January 1995 I went into the doctor for a follow up and was 20 pounds heavier than I’d been. All the weight I’d taken off would be put back on before they finally let me off it (and the cycle begin again) in July.