I hate the drug prednisone

I hate prednisone. I hate it with a passion. I worked so damn hard in my twenties to heal the Inflammatory Bowel Disease (IBD) because I desperately wanted off that drug.

It was partly due to vanity - you can see how puffy my face is while on the medication in my early twenties - it also caused other side effects. Horrible night sweats that had me going through four t-shirts per night. Hyperactivity. Depression. Creepy, weird dreams. Distortion of my body. Acne, which isn't apparent in this photo but I often had it.

I was probably on at least 40mg of prednisone when this photo was taken. I can't remember the year but I was definitely in college so early 90s. My siblings and I used to go to the mall and get these cheesy photos taken for our parents. That's my older brother, Andy on the left, my sister Laura and my brother Rick on the right. Aren't they cute?

I was probably on at least 40mg of prednisone when this photo was taken. I can't remember the year but I was definitely in college so early 90s. My siblings and I used to go to the mall and get these cheesy photos taken for our parents. That's my older brother, Andy on the left, my sister Laura and my brother Rick on the right. Aren't they cute?

I've never had my bones tested out of fear that they will tell me I have 90 year old brittle bones. Prednisone isn't good for the bones. I just keep exercising instead and hope that's countered whatever damage it caused.

I was on oral prednisone, which is a hard-core steroid that saved my life more than once, from 1989-1997. I took up to 60mg which is a very high dose. 

It changed my relationship with my body and mainstream medicine in so many ways.

Back then, when I would have a terrible flare-up, there were no other drug options because I reacted poorly to the usual sulfa drugs they prescribed for that condition. When I took sulfa drugs, it caused lupus like symptoms. I remember waking up my freshman year in college and I couldn't bend my fingers. I was terrified! Thankfully, one doctor figured out that I was having a very unusual reaction (1 in 16,000 - how I remember that I don't know). The gastro doctor had to look it up in a book in front of me because he'd never even heard of that reaction. 

Prednisone was the only thing keeping me alive back then. When I had IBD flare-ups, I'd often go to the bathroom 25-30 times a day, maybe more, diarrhea all day long. I remember being so sick that even taking a sip of water had me running to the bathroom.

It haunts me now. How my case was handled back then. If someone had just pulled me off certain foods in the very beginning of my case, would I have gotten so sick?

By the time I discovered nutrition and how to improve my symptoms by making dietary changes, the disease had progressed and my body had gotten used to the prednisone.

I persevered anyway. I hope to share those experiences eventually because even in the 30 years since I got sick, mainstream medicine still has a long way to go on helping people with GI issues. 

The short story is that I started playing around with my diet. The health food stores had a very small shelf for books back then. I bought every single one.

My favorite one, which I still credit for helping me heal, was called The Self-Healing Diet by Kristina Turner. She was also in Washington and promoted a macrobiotic diet to help heal dis-ease.

It changed my life forever.

It took a lot of trial and error - as my healing processes always do. But I learned that if I stayed on a low dose of prednisone (around 10mg) WHILE doing the macrobiotic diet - which was too fibrous for my system when it was inflamed - then I could eat the healing foods without issues.

At the same time, I started acupuncture and Chinese herbs (thank you Dr. Huang!) and taking supplements. I also worked on the mind-body connection by going to talk therapy and hypnotherapy.

I remember my therapist telling me that I had to REST more. Ha! All these years later, I still have to work on this. We all do. Our American culture encourages pushing through illness instead of allowing the body to rest and heal.

I want to call prednisone an evil drug. But alas, I can not. Without it, I wouldn't be alive. Without it, I would not have ended up studying nutrition at a naturopathic college. Without it, I may not have learned how to heal myself. Without it, I would not have ended up in a career I loved.

Now, I wish so badly that someone had advised me to support my adrenals while I was on it and after. If only I hadn't pushed myself so hard in my career when I finally got well.... If only I had supported my adrenals throughout my thirties, maybe they wouldn't have been hit so hard when I had the surgery and chemo in 2014. 

If only.

"If only" is a long, dangerous road to walk down these days.

There are so many things I could have done differently. My only consolation is that perhaps my story can help others. 

Now, I'm on another steroid called fluticasone. It's helping my body absorb fluids better so that I don't dehydrate so easily. 

I can't believe after all this time, I'm back on another steroid. And likely will have to take it for however long I'm around.

So far, thankfully, I think it's working (I don't like to get excited too soon and share until I'm certain) and the only side effect I've noticed is shitty skin. That's a pretty common side effect for steroids.

I don't seem to have anything profound to share today. Just a story about a girl who did what she had to do in order to stay alive. I guess taking these drugs means I'm a survivor. I have to remember that. That I do what I need to do in order to stay alive. In any other era....

The photos of the puffy face brings back so many memories. Most of them not very good. 

But if I'm going to tell the story of who I was, this must be included. 

The "bad" memories help make us into who we are as much as the "good" ones do.

I try to be grateful for everything prednisone taught me instead of being angry with it for fucking up my body. 

I'm not there yet. I might never get there. For now, I honor the woman that battled a challenging disease at a really young age.

This is the story behind my puffy face.

Much love,
Jules

PHOTO #4. This post is part of a series celebrating my life before I lost four organs to three cancers in 2014. It is an “online memorial” honoring the person I was, in the hopes that I can make peace with the disabled person I’ve become. Every day for 30 days until my birthday, I will challenge myself to write a post inspired by the photo I’m sharing. I will not plan the topic or write ahead of time. I will merely look at the photo and write whatever it inspires. Thanks for reading! #julesfor30 #happyrebirth