I’ve had my hands so full with my pheo surgery and recovery, my one year “pumpiversary” came and went! It’s now been over 15 months since starting the cortisol pump.
So what’s changed?
Prior to the pump, I was taking a combination of oral steroids. As much as I researched, tweaked, and titrated the dosage, I still had a poor quality of life. I could do a few simple tasks around the house. On a good day, I could leave the house with help from my husband, and complete a quick errand such as the grocery store or library. After venturing out, I would be completely exhausted for the rest of the day. Possibly the next day too. I spent the majority of my time in bed, though I hardly slept at night. I had all the symptoms of low cortisol, while still getting many of the cushings-like side effects of too much cortisol. My adrenal insufficiency was very poorly controlled. I felt guilty I couldn’t help my husband around the house or take care of my kids. I was jealous of people that could walk, ride bikes, go out, shop, and basically lead normal lives. Mostly I felt like my family deserved better.
Before the pump, I was sick all the time.
Looking back at photos, nearly every picture I took was from my bed. A picture of my window, my nightstand, my kids near the bed or in the bed with me. That was my limited experience of the world. Every little cold or illness going around, I would always catch. An illness that the rest of my family could kick in a couple of days, would bring me down for weeks, or send me to the hospital. I knew I couldn’t live the rest of my life like this. I was still recovering from over 6 months straight of respiratory illness when I finally started the cortisol pump. My steroid dosage the day before the pump was equivalent to 188mg of hydrocortisone. I saw an immediate decrease in my body’s steroid requirement. As soon as I started on the pump it was around 80mgs, then 75, and in a few months it was into the 60s. Currently 14 months later, I’m at 48mgs. That’s 140mgs less than when I started, and I’m still improving! The Cushing’s symptoms I once had, are completely gone, and it feels great!
The best part is how much this has changed my daily life. I rarely have sick days anymore. I still need to rest more than most people, but compared to my pre-pump life, I’m so much more active than before. I’ve accomplished so much in the past year! Those simple tasks I struggled with before, are hardly any problem at all. I can run several errands a day on most days, I can attend events, festivals, family gatherings, take my children to appointments, etc. I’ve traveled both domestically and internationally. I’ve been to Washington DC twice, had a major surgery and recovered smoothly. Not even a month ago, I flew to Canada solo, and pretty much had the best time ever. I’m actually out living and experiencing life now! I can’t tell you what a precious gift this is!
I don’t want to give anyone the wrong idea, the pump has not been a quick, easy fix. I didn’t start pumping and suddenly feel like Wonder Woman. I had to work on the delivery rates with zero help from an endocrinologist. I had to rebuild my body and the strength I lost being sick and sedentary. I had to make strict changes to my diet, learn what to eat and when to eat it. I’ve had to adapt to my condition, learn to plan and anticipate what my body needs in every situation, 24/7. Even so, there are still sometimes days my body forces me to rest, but thanks to my pump and a lot of hard work, I have less and less “forced rest days.”
This fall, my goal is to keep conditioning my body and regaining my strength. I did find a new endocrinologist locally who ordered the cortisol testing I need to help me fine tune my pump’s delivery rates. Hopefully with this data I can continue to see improvements in my quality of life while mitigating the side effects of steroids. I’ll also be going back to the National Institutes of Health to follow up on the pheo and MTC situation. With any luck, I’ll be confirmed pheo-free and they’ll have a plan for dealing with the medullary thyroid cancer.
So much has changed in 15 months, it is just unreal. I’m grateful for where I am now, and I’m optimistic for what the future holds. Slowly but surely, I’m reclaiming my life and its a wonderful feeling! Thank you to my friends and family that have given me emotional support on this journey!