Throughout the years of being diagnosed with numerous autoimmune/chronic diseases, I’ve learned that it can be a complete mind-fuck. Sorry for the bluntness, but it’s really the only way to describe it. What you think is good news is bad news; what should be soul-crushing is a relief; Up is down and left is right and under is over.
They don’t tell you this when you first get initiated into the chronic disease club. They don’t tell you that sometimes you’ll be relieved to get diagnosed with another disease or comorbidity. And they definitely don’t tell you that 7 years can go by and you’ll still be adding to that list of chronic diseases and conditions. That first diagnosis? Hang on kids, that’s just the beginning.
Ever since I first started down this discover journey and diagnosis path of autoimmune diseases, I have been potentially diagnosed with 17 different diseases along the way. Don’t worry — only 8 of them stuck! Ha! At face value, that probably looks crazy, but that’s through a TON of trial and error, a TON MORE tests and scans, and a pretty hefty Rolodex of doctors and specialists.
All of this is to say that I have been working hard on a particular part of my health for years now. Before I was properly diagnosed and had a treatment plan in place, I was on steroids for 3 years. Most everyone knows this story -but if you don’t, the gist is that because my pain and inflammation was so high and so out of control, steroids were really my only option until we ran enough tests and trials to gather enough information and results for a proper diagnosis, and subsequently, proper, approved, medications. During those 3 years, my weight basically doubled from those steroids. So for the past 2-3 years, I’ve been actively trying to lose that weight, with little to no success.
Now I’m not perfect, and anyone who claims they never slip or never eat junk food is either A) lying, or B) a miserable person with too much rigidity. Nevertheless, I eat pretty darn well, I walk about a mile a day, and I follow approximately a 75% anti-inflammatory diet. I’ve tried all kinds of diet programs over the years (nothing fad or extreme because I think all of that is BS), like Weight Watchers, Noom, Dietitians, Nutritionists, Etc. I have never been more frustrated with something in my entire life – I basically have lost as high as 15 pounds that entire time, but either go right back to the same or it fluctuates week over week. I’ve not gained more, and I’ve not lost anything of significance. Seems weird, right? I thought so too – and so did my doctors.
We tried so many tests – adrenal function, diabetes, thyroid, liver function, etc. etc. And I wouldn’t say everything came back normal, but nothing that would have 100% explained the issues with weight loss. So finally, I was sent to a diabetes and endocrinology specialist. It’s funny when everything finally clicks with chronic illness. This has happened to me a couple times along this journey where the stars align, my medical charts have had enough of the right tests and trends, and I see the right specialist – they walk in the door and might as well just say, yup, I know exactly what this is and this is why. That’s what happened this time.
The endocrinologist took a look at the last 5-10 years trending of my test results, weight fluctuation, medication use, etc. and he looked at me and say “Wow, no wonder you’ve been frustrated.” I could have kissed the man – he said, I’m about 95% sure exactly what this is, and we’ll 100% confirm via some blood work, but let’s start trying to work on this. My blood work absolutely confirmed his thoughts, and I was diagnosed with an Autoimmune Metabolic Resistance.
So what does that mean. It’s complicated, but the gist of it means that no matter what diet and exercise I continue to do, my autoimmunity is fighting against my metabolic system’s ability to kick in and help me lose weight. Which now makes it very clear why during the past 2-3 years of me trying my hardest to diet and exercise, I was only able to fluctuate 10-15 lbs back and forth. The fact of the matter is that I am trying to lose about 100 lbs, which is not going to be possible on my own. Now, that’s not to lessen the importance of healthy eating and moderate exercise. That would never be the recommendation and I plan to keep that up if not increase those aspects of the situation. However, I’ll need help via medications, injections, or surgery.
We’re early on in this process. The diagnosis was just earlier this week; but I have started the first medication we are going to try over the next 3 months, so we will see how it goes! I am really hoping that this is the break that I’ve been searching for.
Let’s go back to the title of this post: “When Bad News Is Good News.” Well, it’s always bad news to continue to add to my Rolodex of chronic disease diagnoses. Nevertheless, so much of my weight struggle is now explained. The fact that after being on steroids for 3 years made me almost double my body weight makes me feel so many emotions. But it also makes my body feel so many negative things as well. So this really could be good news. I’m going to call it good news. Yup. Fingers crossed?
Anyway: I’m rambling at this point. I’ll split this into a couple posts and write more later on what else is going on!