A Challenging Flare

Part of me hoped weaning off prednisone would lead to a newly balanced system that minimized my flares. Not so fast. Getting off prednisone was a huge accomplishment, but I’ve still got a mountain of healing to do before I’ll experience remission.

The small oral lesions that I mentioned in my last post turned out to be a bigger problem than I originally anticipated. Located on the bottom of my tongue (one on each side) they developed into nickel/quarter sized lesions, along with a few smaller ones scattered throughout my mouth and a mess of thrush on top of my tongue. By Thursday evening, I could no longer eat solid foods. By Friday, even pudding was impossible to eat. Because my tongue is so swollen, I can’t chew food without biting into my tongue. And because it takes up so much room in my mouth (and hurts) it’s not functioning the way it should in terms of helping to move food to the back of my mouth and helping me swallow. So everything needs to be puréed smoothly, and then thinned out with enough liquid so that it flushes easily to the back of my throat and can be swallowed. Add to all of this the attempt to stay AIP compliant (which, obviously becomes a secondary concern at this point) and the fact that I haven’t been to the grocery store in a while and do not have the energy to go now, and daily nourishment becomes a pretty ginormous challenge.

It’s been 5 days since it got too bad to eat. I’ve lost some weight (down to 115, at 5′ 7″, wayyyy too skinny for me). But I can tell things are healing and it won’t be long before I’ll be able to eat normally again. In the meantime, this is what I’ve been surviving on:

Puréed soup. It doesn’t look like much, but was really delicious (and super nutritious) for me, considering my condition. It had rich bone broth (which I’ve been drinking constantly on it own as well, every day) carrots, onions, celery, garlic, ginger, and rosemary. All blended up and then thinned out with more bone broth until it was a consistency I could handle. I drank the whole bowl and most of the big mug pictured. Even drinking is a messy, painful, and time consuming venture, but I know I got a lot of nutrition out of this one. Plus, my sickness has no impact on my hunger. I’m starving, and I can feel it. It’s just a matter of getting nourishment past the “zombie tongue”.

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This was a puréed can of “lite” pears. So it does contain some sugar, as in the processed white stuff they use in conventional canning. This was a can leftover from back before I was as conscious about it as I am now, but since we were out of applesauce, I was glad to have it. It also expired yesterday, so it needed to be eaten or thrown out. (When a canned good expires, you know it’s probably time to go. It was likely purchased in, say, 2009?) Anyway, I blended it up, juices and all, and sprinkled on some cinnamon. Really yummy.

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As things are healing, I’m able to tolerate slightly denser food. This is a very ripe banana mixed with a tablespoon of coconut butter for extra fat. It was really delicious, but really painful to eat.

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And this morning I was able to eat guacamole quite easily. I got some fresh parsley from the garden, and zested in some lime (no juice, as that would be EXTREMELY painful- I’d probably pass out!) and thinned it out with some coconut kefir.

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I’m excited that I’ll probably be able to eat some thicker consistencies today. Definitely going to do some smoothies and puddings. And I think I’ll be eating solids by tomorrow. Yay!

The other thing that has been really hard about this particular flare is that it has made talking extremely difficult and painful. My 3-year-old is a big talker and has lots of questions, which I have not been able to respond to for days. If she needs discipline, I cannot discipline her. Giving her direction involves snapping my fingers, pointing, and hoping she figures out what I’m telling her to do. Thank goodness I’ve had LOADS of support from my husband and mother-in-law this week, and they have taken care of all her needs, leaving me free to rest and heal and figure out what to feed myself. I’m very grateful. Without their help, I would not be healing as quickly as I am.

I should be back to normal in a few days, but I thought it was important to document some of what I’m going through right now. I’m hopeful for the day this kind of thing will be far in my past. But for now, this is my life. And it’s just something I have to go through. I’m ok with that.

Friday

Woke up feeling great again today. Until I started to pay attention to what’s going on in my mouth. Tongue is swollen, and upper lip is visibly swollen because of a lesion near the gum line. Thrush is still going strong, and there are lots of smaller lesions with the potential to become more problematic.

I’m obviously in the midst of a mild flare. But remember, I said I woke up feeling great today. Typically, when I’m flaring, it’s accompanied by extreme exhaustion and general discomfort/sensitivity that makes regular activities tiring and painful. I don’t have any of that today. I feel fantastic- as long as I’m not trying to eat or talk. So, though I’m flaring, I still see this as progress.

Breakfast was very difficult to eat and took foreverrrrr. GF cinnamon raisin toast with earth balance spread, orange/carrot juice, and dandelion root tea.

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I don’t have much in the fridge for juicing, so I’m subbing in some wheatgrass for my usual green alkalizer today.

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Walked 3.6 miles with baby girl in the stroller today. I was considering doing a body pump class at the gym, or doing the next P90X workout, but I figured today wasn’t a day to push myself, even though I feel good. It’s clear that something is “off” since my mouth is out of control. But being as consistent as possible with exercise is an important part of my treatment plan, so I felt like I had to do something.

Came home and had this leftover almost vegan Alfredo lasagna for lunch. It wasn’t too hard to eat.

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Was still hungry, so supplemented lunch with this pouch of baby food. Along with juicing, this is the easiest way I know to get nutrients in my body when my mouth is all jacked up.

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And snacked on these banana chips. Slightly painful to eat, but the sweetness of them motivated me to keep going. Enjoyed them with a cup of herbal orange tea.

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Dinner is puréed roasted carrots with organic vegetable stock. Topped with sage from the garden. Dressing it up this way makes it seem less like baby food, and more like a gourmet soup. Though its basically just baby food.

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My daughter has had a bit of a cough today. Seems like she picks something up every time I leave her in daycare at the gym or the nursery at church. She’s been to both this week. I gave her Similisan (a homeopathic remedy for kids) and made an essential oils concoction to rub on her chest and back: eucalyptus, myrrh, clove, and lavender oils in a carrier of coconut oil. I would’ve added peppermint and rosemary if she’d had a fever. And rubbed Young Living’s Theives oil blend on her feet. Haven’t heard a single cough all day. Will repeat this process tonight (coughs always rear their ugly heads when the sun goes down) and see how she does. Also, I’ve been sneaking a bit of probiotics in her bottle at night. (Breaking the capsules apart and giving her a little less than half.) That should help with boosting her immune function.