Unconditional Love

Honolulu - Capitol Building, DebiI started writing this post with the intention for it to be part of the July Self-Care Retreat, but as I kept writing it became something more.

Indulge me just a little.

You would think I would be an expert in self-care by now. After all, that is why I quit my job last December. To devote all my time to take care of myself so I can recover. My self-care when I started out was reading, scrapbooking, writing (oodles of it), going to the movies, shopping, spending time with friends as I was able, sitting on the patio and enjoying the sun, painting my nails (yes, I need a pretty pretty now and then), yoga, and interval runs. However, with each new challenge thrown into my lap since comes a firestorm of emotions within. Anger, sadness, fear, doubt, grief.

I once posted on Facebook that when we go through years of being misdiagnosed then finally get on the right track it is like peeling an onion. You take off one layer and there is another one waiting. I feel like I have an onion that doubles every time I peel back a layer. Adrenal fatigue. Multiple food allergies. Leaky gut. Sjogren’s Syndrome. More allergies.

Through it all, I do what I feel I need to do each day to take care of myself. Put off doing chores because I feel like crap and go to a movie instead? Yes. Read a book instead of vacuum because I have no energy? Yes. It’s the Spoon Theory at work. There are things I have to do each day: shower, floss, brush my teeth (up to four times a day), and cook dinner. Those tasks are spoons that are spoken for as soon as I wake up. The rest of the household tasks and exercise depends on how many spoons I have left. If those are all the spoons I have for the day, then the rest of my day is spent doing whatever doesn’t take much energy.

Sjögren’s is taking a toll on me. I still fatigue easily if I’m not careful.  It’s tough reminding myself that I’m not simply being lazy. I’m not lazy. It’s tough looking at the mess that sometimes grows around me and remind myself tomorrow is another day. Even if tomorrow turns out to be like today.

The baby thing is still living in my head. I can’t seem to shake it. At least not right now. It’s reminding me of a lesson from my years in martial arts that no matter how much I think I know, I know nothing. It’s also teaching me a new lesson.

We need to love ourselves. I’m not talking about loving who we are: strong, independent, witty, talented, etc. It’s loving who we are how we are in each moment. Broken, scarred, flawed. I have to love the me riddled with health problems, may never have children no matter how much I may want them, and functions on a how-do-I-feel-right-now basis.

It’s harder than it sounds. Just yesterday I lamented out loud, “I hate being sick.” A far cry from self-loathing and yes, I’m allowed to have feelings and express them. But I beat myself up for even saying it. That’s not loving myself.

I have to allow myself my feelings without judging myself and move on. Sound weird? Maybe. But we don’t want others to judge us. Why is it okay for us to judge ourselves? Why is it okay for us to love ourselves only when we feel we are perfect or only for those traits that we feel are good? We can love others unconditionally, but not ourselves.

This is work I do every day. Accept and love me for the sick me I am right now as much as I accepted and loved the healthy me.

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.

Going Outside The Box

PathThe raging itchiness from late last Summer caused by eggs returned a few months ago. I tried removing everything I could think of to see if there were any changes and no such luck. I finally got tired of the guessing game and started talking to my integrative doctor. She had me up my Omega intake and we discussed the possibility of Advanced Allergy Therapeutics (AAT). The itchiness went up Super Bowl Sunday. A few days later, it was jacked up again after making the Meyer Lemon Lavender Bars.

The connection I made between those days was the citrus. I tried to cut citrus out but everywhere I turned, there it was in its many different forms. You think cutting gluten or dairy or eggs out is bad? Try cutting out citrus. Aiya.

I knew beyond a doubt that a leaky gut was driving this.  I had to find out what was triggering the skin reaction because the constant itching and scratching was driving me insane at bedtime. It seemed to ramp up as I was trying to sleep. I also knew if I couldn’t heal my gut and alleviate what was going on in my body it would keep me in a state of low adrenal fatigue. My doctor did a blood draw at the end of my last visit three weeks ago for an IgG and IgA. They received the results last week and were able to squeeze me in with a naturopath on Monday to go over them.

My IgG results were high on a few things that were surprising and some that just confirmed what I already knew. This also confirmed that I definitely do have a leaky gut. I had high elevations for banana, pineapple, and chicken eggs, and low elevations for milk, goat milk, whey, duck eggs, baker’s and brewer’s yeast, cranberry, crab, gliadin, gluten, peanut, sesame seed, and whole wheat.  IgA results were high for crab and low for gliadin, gluten, peanut, rye, sunflower seed, whole wheat, and baker’s and brewer’s yeast.

Are you overwhelmed just reading all that? Don’t be. I’m not.

The naturopath suspected high levels of histamine in my body with all the itchiness going on.  But because of already being on what they call a “hypoallergenic” diet and the results of the blood tests, she wanted to focus on healing my gut but not make it worse for me by putting me on the wrong path.

Exit the box.

Enter a different world.

She sent me for AAT. She said to be prepared for the weird.

I get weird.

I managed to get an appointment for my first AAT the next day. Thankfully, the naturopath informed the chiropractor in the office who does the AAT testing and treatments that I’m already on hypoallergenic diet. He explained how our brains will decide that something that is natural and part of our food is “abnormal,” like minerals naturally found in our water, or natural food preservatives in our produce. AAT works to reprogram the brain and help de-stress the organ systems in the body affected by the constant state of abnormalness. It doesn’t always work, but from what I experienced yesterday, I am now a believer.

I was hooked up to the computer with a band around my arm. It sent electrical signals to my body to mimic the various foods and environmental products. I was lying on a bed and using kinesiology with these signals, the chiropractor had me raise my other arm in the air and hold it as the signal was sent and he tried to pull my arm down. His ability to pull my arm down is the response from my brain thinking it is abnormal. The control signal to show me what abnormal felt like is snake venom. SNAKE VENOM! Good thing we’re dealing with electrical signals and not the real deal.

On a whole, my brain thinks the following are abnormal:

  • Beans
  • Calcium
  • Corn
  • Dairy
  • Eggs
  • Food Preservatives (including naturally occurring)
  • Grains
  • Minerals
  • Salts/Chlorides
  • Sugars
  • Vitamin A
  • Yeast
  • Carpet
  • Insulation
  • Cleaning Products
  • Personal Care Products
  • Cosmetics
  • Grass
  • Flowers
  • Mildew
  • Fungus
  • Sinus Fungus
  • Dust/Dust Mites
  • Cats
  • Dogs
  • Cockroaches
  • Sinus Biosubstances

Everything I listed for the blood tests are things I most definitely need to avoid to heal my gut. I am already avoiding gluten, dairy, and eggs. I have not had bananas or any other high potassium fruit since the adrenal fatigue diagnosis. I rarely have crab, pineapple, and cranberries. The challenge will be yeast, sunflower seeds, and sesame seeds. This means no more using nutritional yeast as my cheesy replacement.

Everything from the AAT testing not on the blood tests are things that will be reprogrammed. He did my first treatment after the testing on the sugars. He tested me for the individual sugars and came up with eleven different sugars my brain thinks is abnormal – cane sugar, corn sugar, corn syrup solids, grape sugar, fructose, glucose, sucrose, lactase, molasses, stevia, and one more I can’t remember. He went ahead and treated me for the sugars yesterday when we were done with testing since I agreed I could not eat for four hours after. It was mid-afternoon and normally he instructs patients to not eat for two hours after treatment and to avoid the food for twenty-four hours.  However, sugars and minerals are unavoidable so he doubles the no eating time for to help the new “learning” go from short-term memory to long-term memory.

The actual treatment involved stimulating the acupuncture points along my spine while doing controlled breathing for each individual sugar as the signal is being sent to my body. The stimulation also helps calm the body systems being overworked. In my case with the sugars, all my organs were in a state of stress.

It sounds weird, new age-ish, and/or something akin to voodoo. I don’t know. All I know is at the end of the treatment when he retested for each individual sugar my brain was accepting them as normal. Sometimes when all avenues are exhausted you have to take an unknown trail and blaze it. 

I am blazing my trail without an ounce of frustration or sorrow for what I leave behind.