Taking My Life Back from Adrenal Insufficiency

​I’ve been using the cortisol pump for 8 months now. I wanted to give an update here since I have been spending less time on social media. I am happy to report this time away has not been due fatigue or illness, rather I have been out living my life. Yes, in spite of everything, I have been enjoying a season of good health. Of course that is relative. I still experience things that would send normal people running to their local ER, but to me that’s just life.

Things have been going really well lately. I feel as though I finally have my adrenal insufficiency well managed. It has been, and remains the greatest challenge of my life. This challenge has transformed me, and tested both my mind and body. I’ve learned some very harsh truths about life and the medical industry. I’ve had to research obsessively about endocrinology, nutrition, and medication. I’ve had to fight doctors, pharmacies and insurance companies. The cortisol pump has been the biggest game changer in this journey. Before the pump, my health was gradually declining. I spent much of my time in bed, too fatigued to do things with my family or around the house. On good days I could leave the house, but it would completely wipe me out for days. I was experiencing the symptoms of both too much and too little cortisol because oral medications simply cannot replicate what a healthy body does naturally. I have so much more control with an infusion pump. The first day on the pump my steroid dosage went down by 39% without sacrificing any of my quality of life. My dosage has decreased another 21% since then, and I have a more active life now than I’ve had in 2 years.

Another big change came when I went gluten free. I was in denial about this one, it kind of felt like a dirty secret. I really didn’t want to give up pizza and bread and have a restricted diet, but it happened on accident actually. Mid September I started feeling really good, much more energy than before, fewer low cortisol symptoms. When you live with a chronic health condition, mysteriously feeling better is unusual. I reviewed my data, all of my journals, my meds, my food. What was different? None of my meds had changed. Then I realized that I had been eating all of the same foods as my gluten free daughter, for over a week. Mind. Blown. Was the answer really that simple? Turns out it was. The longer I’ve stayed gluten free, the better and better I feel. I can’t sit here and say this would help anyone else with any medical issue, but it’s been a huge improvement for me. I figure, if I can give up bodily organs in order to be healthy, pizza is really a small price to pay by comparison.

Lately, I feel able and capable. I can handle day to day life with minimal issues. Problems that would have derailed me before are now easily overcome or ignored. I am more involved with my children. I can take them on walks or go the park. We do craft projects, read, and bake together. Not that I’m trying to brag, but this is a big change for someone that hardly had the energy to get out of bed a few months ago.

One of my biggest goals since becoming adrenal insufficient has been to rebuild my strength. Even before adrenal insufficiency, pheochromocytomas made me very thin and weak. I’m sick and tired of feeling fragile and weak. Now I am finally at a place where I am physically able to work on this goal. Exercise with adrenal insufficiency and an active pheochromocytoma presents some unique challenges that makes progress exceedingly slow, but progress is progress. I feel so grateful to have this physical ability and to see my strength and endurance very slowly but steadily increase.



I think if it weren’t for my pheochromocytoma, I could have a pretty normal life now. It’s been relatively quiet I guess. I’ve only had two painful attacks in the past week. I still have small attacks multiple times a day. They don’t feel very good either, but after nearly 7 years of dealing with this, I consider this tolerable. In a weird way, I’m almost grateful for these attacks, as they keep me motivated to get this tumor the heck out.



I fly to D.C. next week for tests and imaging at the National Institutes of Health. With any luck, perhaps this could be the beginning of the end of my “life with pheochromocytoma.” Fingers are crossed!! This will be the first time my tumor has been imaged in over 6 months, so hopefully it hasn’t changed. Hopefully it hasn’t grown much and is still operable, because that is my only chance to be cured of this. I could finally have my body to myself and not have this little tumor control or restrict me anymore. I can’t tell you how amazing that sounds to me.



I have so much to be grateful for. Armed with knowledge, the cortisol pump, and with the help of some diet and lifestyle changes, I am taking my life back from the ravages of MEN2a and the subsequent medical conditions it has caused. I also hope with help from the National Institutes of Health I can one day close this chapter of my life, and this can all just be a memory. A testimony of God’s grace. 

I feel excited and optimistic. Wish me luck! 😉

❤ Michelle

Advertisements

5 thoughts on “Taking My Life Back from Adrenal Insufficiency

  1. We can get through this, one gluten free crust at a time 💖😘 Love you so much. You have no idea how happy it makes me each time I read this, I just can’t even. “The first day on the pump my steroid dosage went down by 39%” liiiiike 😱

    Liked by 1 person

  2. I’ve been gluten free for 6 years now and I know that has only been a bonus to my health. Peeps think I’m a wierdo because I am so strict with my food. But they are not the ones that have flu like symptoms for three days after contamination….
    Our youngest son has Down’s Syndrome and he does a GF diet with me. After all the research of the gut- brain connection it just made sense. I think finding out that I had an intolerance to gluten before he was born was just God’s way of paving the road of knowledge for our little man’s health…. and mine. I was gluten free before I was diagnosed AI.

    Liked by 1 person

    • I totally understand. My family thought I was just being a pain at first, and this was just a phase I was going through, lol!

      At the very beginning I cheated once and ate at Raising Cane’s. That really cleared up any doubt I had that the GF diet was making a difference. I was so sick within hours of eating. Through the past year I have been accidentally “glutened” a few times and my family has seen what it does and they take it seriously now.

      We started my daughter on a GF diet about 3 years ago to see if it helped any of her autism symptoms…and it did! We never looked back, but it wasn’t until last year I accidentally went went gluten free, lol. Again, once I saw the difference, I never went back. Since we were already somewhat used to the GF lifestyle with her, it was not difficult to adapt.

      Like you, I’ve noticed for both my daughter and I, when we eat contaminated food, we have debilitating symptoms for the first 3 days, then it takes about a week to really feel “normal” again.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s