Tuesday, December 22, 2009

hitting the wall

After 4 months of adapting to the invigorating and infuriating perks of Prednisone Mania (P.M.), my first weeks without Prednisone are proving to be severely fatigued, and I'm losing my hair in thick handfuls each day.   I did alright through the taper; mild vertigo and a joint ache here and there, but generally well progressed.  Now that I'm completely off, I've hit a wall.  I've slept in until 930-10am over weekends and struggled more than I ever have to get up in the morning for work by 7am.  Today, I finally gave in and called in sick to work in favor of sleeping in until 11am.  If it seems to you that I shouldn't be worrying about needing this kind of rest, know that I worked heroic 8-12 hr shifts last year that ran anywhere from 4am to 10pm, averaging 6am clock-ins.  So I'm disgruntled with this interruption to my upbeat morning lifestyle.  I'm also back to being too nauseous in the mornings to eat breakfast.

Fatigue is a common symptom of Prednisone withdrawal, as is hair loss (Murphy et al 2009; Miozzari & Ambuhl 2004).  So I guess I'll deal. 

On the bright side, I saw a dietitian today.  Unfortunately, dietitians/nutritionists within hospital systems tend to be... less knowledgeable than those of us who come in with specific questions might hope.  I mentioned my concerns for balancing
1) soy products (as I don't eat dairy and need my fermented foods, but have been warned about over-consumption of soy and inflammation),
2) grains (high residue, high carb, my interest in leaning toward vegetables to substitute most grains/breads, etc.), and
3) sugars (even when I was diagnosed twelve years ago, one of the first things I was told was that I ate a lot of processed/complex sugars which probably exacerbated my gastrointestinal sensitivity among other things, and to stay away)
Her response to my inquiry regarding all of these things was, "oh I wouldn't worry about that."  I kid you not.  I attempted to coax a more detailed explanation out of her, as I was eager for her opinion of what I had gleaned from my own research.  Nada.  She did not even allude to the Elimination, SC/Paleolithic, Mediterranean or any IBS-friendly diet.  I'm so glad that by some glitch in the system there was no copay for this appointment.  I understand that most nutritionists see patients who are new to approaching their medical care through a dietary component, and that many people just need to be told not to consume more than 200 daily grams of fat or drink more water or that they're allergic to some foods.  It's not her fault she couldnt tell me exactly what I wanted to hear.  It is her fault that she was totally unaware of how to answer any of the questions I asked -- I posed them to be specifically familiar to people in the nutrition profession (I have a friend who in nutrition whose first reaction to hearing the summary of the last four months was to ask if I had tried the Elimination diet and what it told me if anything).  Clearly, if I want a more straight-forward conglomeration of all the research I've been doing, I need to see a naturopathic nutritionist, or someone straight out of college who still knows how important it is to understand how nutrition and disease interact.

On the actual bright side, I made apple/fennel/butternut squash soup with supper tonight.  Pureed veggies are my saving grace.  H.B. liked it!  Yayer!

1 comment:

  1. Weaning of of prednisone is so terrible because of that! I'm always afraid to cook during that time because I'm afraid someone will end up eating my hair. Very embarrassing to me...And of course, the fatigue really is so unbearable at times. I hope you're able to recover from these side effects soon.

    I'm disappointed to hear about the dietitian appointment as well. I've been debating whether or not I should set up an appointment, but I've been afraid of this kind of thing. I really wish some sort of sub-field would be more prevalent (or emerge?) in nutrition concerning IBS and IBD specifically. Also, IC in my case, so perhaps just dealing with autoimmune disorders in general since there seems to be a large number of similarities concerning dietary restrictions among them.

    That soup looks delicious by the way. One of my favorite things about keeping blogs is posting pictures of food creations. And yet, mine have all been elsewhere. I keep meaning to post a few of mine as well.

    Best of luck in your endeavors!!