A Foodie’s Journey with an Autoimmune Disease

This post isn’t about my cute new ‘do (although ain’t it SO cute?!) This is a post about invisible diseases aka autoimmune diseases and how, for the first time since my diagnosis 7 years ago, I finally had to face my rheumatoid arthritis head on.

This year has been rough. There’s no way to sugar coat it. I’ve hinted at my health issues, my studying for an exam and at my absence on here, but I’ve never really given you the full story…but I’m ready to give you a glimpse today.

See, today has been the first day since mid-July that I’ve been able to walk without pain or a limp. I wish I was about to tell you the story of my success at healing my rheumatoid arthritis through healing my gut, but alas, that plan didn’t pan out this time.

Let me back up. I was diagnosed with RA 7 years ago and was immediately put on medicine. I was told it would stop the progression of the disease and the damage to my joints, so I listened and obeyed…and continued to live my life normally, diet and lifestyle choices and all. Hell, I even started a blog to showcase my love of New Orleans food, and we all know how healthy Nola dining can be.

So back in March I decided to get off my meds for many reasons that I won’t get into now, but I had been starting to educate myself on the negative effects of these meds and also the ties between gut healing and auto-immune diseases. There were multiple layers of changes to my diet since March, but long story short, I was feeling fine until mid-July when I failed my exam (which I had been studying for a year.) If you know anything about AI diseases, you know what an important factor stress is. Within 2 days, I was in a full-blown flare. Feet, knees, hands, elbows, wrists, hands, fingers, neck and even sometimes my jaw were all under attack.

I had 2 options: get back on meds or try to heal it naturally. Knowing that I could always go back to meds, we opted to try to heal naturally–I wanted to give it an honest go before caving. We decided to see a homeopathic doctor in town to help guide us, and I was soon put on a 90-day elimination diet which started at the beginning of September. I was seeing their chiropractor, taking (literally) ALL the supplements, and following a diet that eliminated all grains, dairy, sugar, non-organic meat, majority of fruits, eggs, nightshades, alcohol, coffee, OTC meds and many, many other delicious foods. I basically ate cauliflower and kale for 3 months. Not really, but looking back, that’s what it feels like!

All the while, it felt like things were getting worse. I kept saying to Andres, “I just wish I’d feel better a tiny, tiny amount each day. It would be easier to go on.” But no…one day I’d wake up in the middle of the night with a paralyzed right arm, another day it was my wrist. (Sidebar: do you know how important your wrist is?? Like, you really can’t do anything on your own with a wrist that doesn’t work.)

One day recently I actually got stuck on a small step stool. My knees didn’t have the strength to lift me up off of it. Some days my left jaw would lock up, making it hard for me to chew anything. I was walking at 2.5 mph at best, and my feet and knees were pretty much in permanent pain and stiffness. If you have seen me out and about in the past 3 months, you’ve probably wondered why I look crippled. Or if you didn’t notice, it’s because I was sitting still, having a rare good day or on Advil (which was going against doc orders.)

Needless to say, there were tears most days and depression was seeping in. On top of all of this, I had decided to take my exam again in November (it’s only offered in March, July & November) because I didn’t want to lose all that knowledge. I was basically a disabled ghost, confined to my work office, our home office studying, my bed and an occasional forced public appearance.

After the exam on November 9th (still waiting on results btw), we had a weekend trip to New Orleans planned. By this time, I was around the 70 day mark in my elimination diet. I was definitely nervous about it because I had arranged to eat at some new restaurants. I thought I could just have a taste and let Andres eat it all, but once some of those dishes hit my lips, I couldn’t hold back. I kept in in reigns, but the damage was done. I had to take Advil to keep my whole body from locking up. Worth it, though😉

By the time Thanksgiving rolled around, I was almost to the finish line in my 90 days, but there was a problem. I still felt like shit and not only that…it was getting worse. Thanksgiving day was hard. Eating my mashed cauliflower and sweet potatoes for the umpteenth time while squash casserole, rolls, gravy and cranberry sauce were being passed around me, while simultaneously seeing the heartache in my family and friend’s eyes while I hobbled around all day was my breaking point.

Even as I write this, I tear up, because it’s hard to see the ones you love look at you like that. I don’t know how to explain it. It’s kind of simultaneously heart-warming (confirmation on how much they love you) and heart-breaking (imaging the reverse and picturing them as the one struggling breaks my heart) …both of which make me want to cry.

After many, many discussions, Andres and I decided it was time for me to go back to my rheumatologist and talk about getting back on meds. I was less than 2 weeks away from my 90-day target, and I knew it wasn’t going to improve in that time frame. It was also dawning on me that my homeopathic doc was showing signs that *he* was just getting started with me. But in my mind, my brain was locked and focused on giving it 90 days. I truly believe that if I could stick with it for another 3-6 months, that I could potentially heal myself, and I’m not against trying again in the future.

But I physically couldn’t do it anymore. I have a full-time job, an active blog, an intense longing for exercise, an insatiable appetite for good food, a devoted husband that deserves a break from taking care of me, friends & family that deserve me at my best during the holidays and finally…myself. I need me back. So. freakin’. bad.

I was lucky that my rheumatologist fit me in the next day after I called, and after talking to her about a new drug, I knew it was time. I immediately got on steroids until the new drug arrives, and had some pho last night, which I have been craving for months. It was amazing. And when I woke up this morning, my knees bent without pain and making it to the toilet was a breeze! I knew instantly that I made the right decision. I feel like I’m back!

However, having gone through so much, I’m not so naïve to think this is the end. There may be complications getting on the new drug, and I probably will have more flares in the future. My battle & journey is never over. I don’t get that luxury.

There are, however, some silver linings to this story. I’ve lost over 30lbs and counting!! Fitting back into old favorites and buying new clothes that I look and feel good in has been an absolute delight! I needed to lose that weight, and now I know what diet works for me if I ever need to shed some LBs in a jiffy.

I’ve also got an entire new appreciate for food, and I now know what I really should and shouldn’t be eating, even if I’m on meds. I am not going to all of sudden just go back to my old eating habits. My plan is to adopt a paleo diet 90% of the time, still leaving room to indulge within reason during the holidays, special events and dining out (especially while in New Orleans!) I may even continue to see my homeopathic doc for nutrition guidance.

More than anything, I’ve gained a full understanding of the value of health. I know that my story may sound like a cake walk to some people. After all, I get to fallback on medication that brings me back to “normal”…some don’t get that opportunity.

I’ve learned a lot about the ugly side of food in the U.S., natural remedies available to us and the importance of eating responsibly raised animals. To be honest, Andres and I talk about removing meat from our diet all the time (we both love and have a strong sensitivity for all animals), and although we fully admit committing 100% is almost impossible, we definitely are putting in efforts to reduce our consumption and continue to educate ourselves on plant-based living.

I know this is a LOT more than I usually share personally, but I hope it opens a door to more personal relationships. Posting about food and New Orleans sure does get a lot of likes, but when I really share and open up, so do y’all—and that is what really gives me joy, so I want to continue to share more in the new year.

I hope my story has inspired you, helped you in your journey or at least opened your eyes to what someone with an autoimmune disease may be going through. I’d love to hear about your journeys, things you’ve learned along the way and I’m also always open to suggestions.

I’ll also say one more thing: there is actually a lot more to this story and why all of this is happening, but I’m not quite ready to share that part yet. But I will one day. Until then, thanks for reading and I wish all of you a happy and *healthy* holiday season with your loved ones!!

xo,
Danielle