Autoimmune Hell

SnowI am struggling. Getting answers to help you move forward doesn’t always propel you forward at a breakneck pace to recovery. I am knee-deep in snow without snowshoes. It is a battle to keep putting one foot in front of the other.

Fatigue keeps me from being as productive as I want to be. I don’t know whether it is the adrenal fatigue, hormone imbalance, the food allergies, or the Sjögren’s which finally decided to join the party. I woke up Monday morning and did not want to get out of bed. It was like back in my full-blown hypothyroid days when I had to drag myself out of bed. Somehow I managed it. And somehow I managed to do 20 minutes of yoga then three full hours of cleaning and projects without a break. Normally I stop and sit between tasks to give me a little recovery. It came at a high price. Food Board

My altered diet is slowly driving me into a new kind of insanity that I don’t think the world has seen yet. No gluten, dairy, eggs, yeast, crab, soy, sunflower seeds, sesame, peanuts, pineapple, cranberries, and bananas. Sounds easy, right? Think again. There are also foods I need to avoid to help my body recover from adrenal fatigue. Foods like high potassium fruits, caffeine, oranges, grapefruit, and sugar just to name a few. Now, go to your bathroom and pick up your lotion, shampoo, conditioner, and/or makeup and check for sesame, sunflower, or soybean oil. I use Bare Minerals makeup and knew everything I already had was gluten-free. Turns out most of the lipsticks, lip liners, and lip glosses have at least one of those oils. I nearly cried when I tossed them all in the trash can. The lotion, shampoo, and conditioner my doctor wanted me to try because there was no gluten or soy in it had sunflower oil. Now, go check your favorite potato chips you have hiding in the back of the pantry. Sunflower oil. Just when you think it couldn’t get harder, clean out your fridge of all condiments, pickled veggies, and any meats/fish that were smoked or cured. Clean out the wine rack and vinegars in your pantry. That is just a fraction of what it takes to go yeast-free. I nearly dropped out of my chair when I was looking up online what I needed to do for a yeast-free diet. Everything pointed to the anti-candida diet (ACD). There is some overlap between the allergies, adrenal fatigue, and ACD. I had to resort to the boards to keep everything straight and to help Chaz remember. I’m still not getting it all right, but I’m doing my best. If I have more than I’m supposed to of limited foods I don’t beat myself up, I remind myself to plan better.

RaindropsMy life seems to be a contradiction of illnesses. On the one hand I have a leaky gut. On the other, I am allergic to yeast and can’t have the fermented foods that would aid in healing my gut faster. Sjögren’s is typically treated with different medications which would worsen my leaky gut and the adrenal fatigue. I need sleep to recover from adrenal fatigue but the dry eyes and dry mouth keep me from a full night of sleep. Oh, there is more, but my head is about to explode. I’ve already decided that oral medications for the Sjögren’s will be out of the question. Thankfully, I was able to text with Dr. Cuz about Sjögren’s on Sunday while we drove down to Louisville for a birthday party. She’s the one who called what I’m going through right now “autoimmune hell.” She assured me that a friend of hers (whom I’ve met) has been med free for two years with acupuncture. Now if only the rheumatologists office will call me back! I went in for AAT yesterday and got a list of the rheumatologists use for referrals. The woman who gave it to me recommended the first on the list. When I Googled her after I got home I found she went to UCLA School of Medicine for acupuncture. I like her already. CALL ME BACK, DAMMIT!Happiness

Through it all, I just want to lie down and cry. But I can’t. Sjögren’s won’t let me form the tears to cry. Do you know what it is like to grieve the loss of someone and not be able to cry? Detached. Crying is such an essential part of dealing with sadness and all the emotions that stem from it. I can’t cry and i want to cry about it. But I can’t cry and I still want to cry. Yes, it’s an endless cycle of wanting and being unable.

The bright side is my thyroid, Vitamin D, and iron levels are all within normal limits. Soy has proven to be the bane of my hormones. Last cycle was the first time in a long time that my cramps didn’t have me curled up in the fetal position on the bathroom floor after tossing the contents of my stomach. No hot flashes either. I’m more thankful to be work-free as I work through all this.  And even as another type of brain fog has seemed to settle, I am still managing to write creatively.

It is a struggle. A big one. I have to remind myself to take everything one day at a time. I have to remember I didn’t get sick overnight. I have to count spoons again in the morning and throughout the day to make sure I can make it to the end. I have to shut myself off from thinking about the future and focus on the present because that tick-ticking of the clock keeps getting louder and louder. If nothing else, I can finally relate to Captain Hook.


  1. Hugs to you! If anyone can find a way through this, it’s you! You’re bright and resourceful, which makes me confident you are going to figure it out. Wishing I could drop by just once a week to lend a hand in the kitchen or just cheer you on!

    • Thanks, Johnna! I know I’ll come out on the other side of this. I just want things to stop trying to drag me down already! Don’t think I can carry much more. I wish you could drop by, too! We’d have such fun. 😀

  2. Oh Debi, I am right here with you! You nailed it when you said: On the one hand I have a leaky gut. On the other, I am allergic to yeast and can’t have the fermented foods that would aid in healing my gut faster.

    Same problem for me. I’m supposed to eat fermented foods for the probiotics, but I’m not supposed to eat fermented foods. It’s a catch-22.

    Take heart. You have your bloggy sisters going through the same thing (minus Sjogren’s for me), the universe is on your side (even though I’m sure it feels like it’s not sometimes) and you are a powerful woman. You will get through this and come out on the other side like a lyonesse, ready to roar! 🙂

    • Iris, there’s a ton more that I should have but can’t and it drives me nuts when I read these things because I’m screaming inside, “IT MAKES ME SICK/ITCHY!” It’s crazy. I’ve been taking a probiotic, but if you read all the gut healing stuff, I can’t have at least half of it.

      I know I’ll make it through. I think I wrote this as much for anyone else going through this as I did for me to just get it out of my system. 😀

  3. Damn sister. I am so sorry. I wish you all the very best healing. Sending you tons of aloha.

    Here are a couple of quotes that have helped me in times of struggle with illness:

    “Find a place inside where there’s joy, and the joy will burn out the pain.”
    ― Joseph Campbell

    “It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure.”
    ― Joseph Campbell

  4. With sjogren’s, crying should leave you having to blow your nose…so at least it looks somewhat like crying. I’ve had no tears for years. EPO should ease the dryness discomfort considerably, while you’re also taking Omega 3’s.
    You’re probably in need of glutathione, and there is now an effective liposomal form available from at least two companies. Zinc picolinate, or thymus extract also for immunity…
    Best wishes for improvement! ..Mary

    • Thank you, Mary. I’m already on Omegas and my diet is high in anti-inflammatory foods and very low in inflammatory foods. As for the rest, I’m going to let my doctors decide what else I need to be on.

      • I was dx with sjogren’s several years ago. I do well to stay away from many anti-inflammatory
        foods/herbs. They cause the eye dryness to be so much worse. Things like green tea, ALA,
        Turmeric; too any and all eye creams/face lotions.

        • Thanks, Betty. I’m already not drinking green tea because of the anti-candida diet (ACD), along with some of the high ALA foods because of either allergies or ACD again. My appointment is just a couple of weeks away now. Crossing my fingers that a cancellation comes up so I can go in sooner. 😀

  5. Hope you feel better soon … I know that is easier said than done. It sucks having so many things to deal with at once. Just don’t stop pressing in. 🙂

      • Glad you are still kicking. How did you end up with a diagnosis of Autoimmune? I have Thyroid problems, chronic fatigue, adrenal failure, Fibro, diabetes, and high blood pressure. not too many things wrong … actually the list is longer, but who’s counting. Sometimes I feel just as you described … so I was curious.

        • Back around 1998, I was having daily migraines. My doctor at the time thought I might have lupus because my ANA levels were high on the blood work. The rheumatologist he sent me to only tested me for lupus. In 2009, when my doc (different one) ran blood work that discovered the hypothyroid, the ANA levels were still high. He wasn’t worried, but because they had been high in the past, I wanted answers. So the rheumatologist he sent me to tested me for pretty much everything (but Celiac). He thought it would come back positive for Hashimoto’s, but it was Sjogren’s that was positive. Since I wasn’t presenting with the typical symptoms he told me to come back to him when I did. I feel ya with that list. I feel better knowing that the things like the migraines, ataxia, low blood pressure, low body temp, hypothyroid, IBS, etc. were all just symptoms of something bigger.

  6. Unfortunately, I don’t have any great words of wisdom, Debi. I agree with everyone else that you are strong and you will figure this out and get past it. I also agree that acupuncture can be amazing with its healing abilities. I’m sure you will find the right combination of all. Hang in there, dear. Final thought … if you have to push yourself, do it for yoga, but not for cleaning. 😉


    • Thank you, Shirley! You never need great words of wisdom. Your support is always enough. 😀 I really don’t know what got into me on Monday. I wasn’t even really pushing…I just couldn’t STOP. It was like I was on full-throttle and woah-what-the-hell-do-you-think-you’re-doing at the same time and full-throttle won out. I haven’t done much since then other than cooking dinners and doing laundry. Editing doesn’t count. I get to sit in front of the laptop for that. hehe

  7. Auuuugggggghhhhhhhh… I’m so sorry. 😦 I really, really wish we could go grab a cuppa and have a nice long chat. I think you and I have lots to talk about. Sending you lots of hugs and love from across the miles.

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  9. I’m finally able to catch up and find out what is going on with you. Wish I knew the right thing to say except I cannot wait to see you in 3 weeks to give you a BIG hug! Stay strong, my friend!

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