For most of my life, I was the skinny girl. I thought it was normal to be able to see my ribs. I thought a sunken in collar bone meant I was attractive. I assumed my thighs were supposed to be as thick as my ankles and my biceps were supposed to be as thick as my wrists. This was my normal, but it was not a healthy normal. My perception of reality was skewed.
|Photo from 2004, a year before diagnosis.|
Note the muscle wasting in my arms. Note how visible my collar bone was.
Before I was diagnosed, I was clinically underweight with an unhealthy BMI of less than 18. After starting treatment, I gained weight practically overnight. That rocked my teenage world. I went from wearing size zeros to have to constantly buy larger clothes. I hated that bathroom scale. I hated seeing the number it showed. That number seemed huge to me, and I cried every time I saw it.
|Photo from 2005, a few months after diagnosis. |
I was 30 lbs heavier here and incredibly self-conscious.
I learned quickly that I had to repeat to myself how I would rather be alive
than a walking skeleton slowly dying
. The scale does not tell the whole story. I was gaining muscle. This muscle was making me healthy
. Although a BMI of less than 18 made for a pretty small number on the scale, it was not healthy
|Photo from 2007. I actually have muscle!|
In 2008, I was switched to Qualitest
. Suddenly, my medicine seemed to stop working. Endo #1 was beyond baffled so he just kept increasing my dose of HC. I gained an inappropriate appetite, and with that, I gained even more weight. I was clinically overweight.
|Photo from 2008, and the start of the additional weight gain.|
Steroids are a very interesting and powerful medicine. There is a strong misconception that steroids instantly cause weight gain. That is a gross simplification of a very complex issue. If you are on the proper dose of steroids that closely mimics the circadian rhythm, you should be able to maintain a healthy weight. The first weight I gained on Cortef made me healthy. The weight gain on Qualitest were due to an ineffective medicine given in the wrong amount at the wrong time.
|Photo from 2010. No collar bone visible here!|
My health began to slowly decline again in 2011. Weight started dropping off, but I didn't really notice it at first. Eventually, friends began to ask me about my change in weight. I decided to step back on that cruel scale and see what it told me. I was shocked when I realized that I was dropping weight! But I could not explain the weight loss, which made me nervous.
|Summer 2011. Fall 2011. Spring 2012. Summer 2012.|
I went from a size twelve to a size four. And I only tried on that size four as a dare.
I started working at my engineering job August 2012 with limited work clothes. I am not a fan of shopping. The loud noises, the crowds, the act of putting clothes on just to take clothes off, the stupidity of how female clothing is sized- these are all extreme cortisol utilizers for me. I normally end up feeling very drained and sick after every trip to the mall. But I needed clothes to wear to work. My aunt visited me for my birthday in October 2012. When she learned about my severe lack of work pants, she took me shopping and bought me six pairs.
That shopping experience was very overwhelming for me. My aunt asked me what size I wore. I said size twelve. The twelves fell off of me. We went down a size. The tens fell off. We went down another size. The eights fell off. We went down another size. The sixes fell off. But the size fours? The fours fit.
The size fours fit me.
Never was there a time after my diagnosis where I could wear a size four. I was secretly pleased with this discovery. I was back to being the skinny girl. Naive me still thought I was healthy.
|Photo from November 2012. My coworker and I realized we were matching one day.|
I was so fatigued I could not stand up straight. Also, those size four pants were falling off of me.
I continued to lose weight and pretty soon those size fours were falling off of me as well. My close friends and family were growing concerned. I was, once again, hovering around an unhealthy BMI.
|Photo from November 2012. All the female engineers on the two teams.|
I remember standing like this to try to hide my weight loss.
I was also too fatigued to stand up straight.
My body finally screamed "ENOUGH" and I experienced the Nightmare of 2013
. Slowly, we figured out why the nightmare happened
. I made several lifestyle and treatment changes to help re-establish my health. I started to gain weight. It was incredibly difficult for me to look at that scale, but I had to keep repeating to myself, "I am healthy
I then added a very dangerous additional sentence to my self talk.
"I am healthy
, and guess what? Those size fours still fit! It is ok that I am gaining weight because my size four work pants still fit
|February 2015. I'm modeling how I broke my work ID badge, but I'm wearing those work pants!|
You can also see my cortisol pump clipped to my pants in the picture.
I am now several pounds heavier than I was a year ago. I can no longer pretend that those size fours pants fit me. In reality, none of my work pants fit comfortably. I cannot tell you how many tears have been shed over this revelation, but I can say there have been quite a few.
|Six pairs of pants that don't fit (and a cat).|
This weight gain is GOOD. I am blacking out less. My blood pressure has stabilized. My fatigue has lessoned. These are all good signs!
I need to get rid of those size four work pants. I need to buy larger clothes. While this is an incredibly hard thing to admit, I should not view it as a negative. This is physical proof that I am in a much healthier state. My self-talk needs to reflect that.
It is better to wear a larger size and be ALIVE.
I want to remain Clearly Alive.
Labels: After College, Back in Texas, High School, Pre-Diagnosis, Steroids