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”.
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.
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.
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.
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.