Are You Trying to Avoid Me?

During my second summer with the Creative Pulse grad program, a bunch of us went to lunch at a funky little bistro across from campus. I had been diagnosed with lupus about 5 years prior, and I had eliminated alfalfa sprouts from my diet. This was easy as I had never been big on alfalfa anyway. However, there was a sandwich I really wanted. Unfortunately it had alfalfa sprouts, but I really wanted that sandwich. I rationalized that it's less than a handful, so what's the big deal? Turns out, it wasn't a big deal. But one of my mates said, "Well, if it triggers lupus flares, why are you eating it?" I didn't appreciate the judgmental look and insinuation that I wasn't taking care of myself. but I said, "Because I want the sandwich, and I don't know if alfalfa will actually affect me at all." This was true, but in retrospect, I rather resent having to justify my dietary choices to someone I barely knew. Anyone who has had to navigate the chronic condition waters knows this feeling because there are droves of things to avoid in life once you get that diagnosis.

Don't you get judgy on me, too Goat.

I do avoid things that I do know trigger me. One summer we had about 25 pounds of tomatoes; not kidding. We ate tomato soup a lot. We had tuna salad on tomatoes. We had tomato juice, sauce, and salads. Tomato everywhere. Of course, being a nightshade it did eventually create some inflammation. people with autoimmune disorders are often warned about them. I had to eat pounds of them daily for any kind of response. Consequently, I should avoid eating pounds of tomatoes. 

Looks fun, right?

I avoid the sun. It gives me lesions. I have always burned mind you, but since the lupus, I am very cautious of the sun especially when I'm feeling slightly lupie. Usually, oodles of oxide sunblock keeps things in check, but sometimes all the UV clothing and big hats aren't enough. The spots, the lesions, the rashes come on me. So I avoid the sun most of the time. 

Creepy or divinely funky?

I avoid beans, apples, pears, and wheat because they trigger my IBS. It's terribly unpleasant to have intense stomach cramps that wake you up in the middle of the night because you've eaten something tasty like an apple or less than a 1/2 cup of black beans in a burrito. The urgent diarrhea is no treat either at 130am. As a result, I avoid those foods as much as possible. 

They are ever so tempting.

I avoid sulfa drugs, which makes matters tough because I also have a reaction to penicillin. The penicillin gives me lesions in my mouth, but the sulfa brings on full-scale, stay in bed, everything hurts so don't touch me flares. Both are on my contraindicated meds list at the doctors' offices.

 Pick one. I bet it's to be avoided.

I avoid most rose` wines and some red wines because some of them give me an instant migraine. Not all, so I identify the ones that do and stay away from them. Unfortunately, sometimes even the ones I think are ok, aren't. I can get away with one glass, but not a second; sometimes I can't even get through one glass. Sangria though tends to be an absolute no-no as it usually has copious amounts sugar in it. Obviously, I avoid a lot of wine.

No can do, Karen.

It gets tiresome though. It's fucking annoying if I am to be completely honest. You see, sometimes the foods you are to avoid for one condition are ones that are recommended for others. Take beans for example. They are high in the FODMAPS. which means all the IBS lists say stay away. But then you doctor (the GP not GI) tells you to get more fiber like in beans or whole wheat. Well beans are out thanks. The whole wheat though is carb heavy and while it may be ok for some with IBS, it makes my tummy just as angry as others. I still love a good pastrami on rye, but I know it's going to make me miserable, so I avoid the wheat, multigrain or whole wheat, or sourdough even. Although sourdough and rye aren't usually quite as painful that I've noticed anyway. I still avoid them as a general rule though.

Sure, they look innocent when they're sleeping, but don't be fooled.

Med woes also complicate the avoidance issue. I take Lamictal for migraines. This med is actually for seizures, but I take it and it messes with my balance and sleep. I already have balance issues thanks to migraines, but now it's just that much more fun. The insomnia and sleep disturbance of course make it tough to sleep all night (we won't even talk about the horrid nightmares). A steady sleep schedule is important for migraines and autoimmune disorders. I do my best, but I can't avoid the Lamictal according to my doctor. There aren't too many med options left on the migraine list.

Seriously. Pick one.

I eat a low carb diet to reduce the inflammation in my body. It also helps with the weight maintenance mind you, but I did it primarily to manage the lupus et al. Now this way of eating is great because it eliminates the wheat and sugar etc. However, it also means you have to eat a lot of vegetable. Sounds great, right? Until the broccoli, cauliflower, and Brussels sprouts you love turn on you. When I did the elimination IBS diet, these three vegetable that I adore came out on the iffy side of life. I had mashed cauliflower and steamed broccoli on the same plate the other night and paid for it. I need to be more careful with them. One at a time, not two and definitely not three. 

Only once in a while, Dana.

Another thing I have to avoid is alcohol. On my low carb  diet, I'm not supposed to have a lot of beer, but one now and then is ok. Cider is out because of IBS and apples, but IBS allows for one or two beers. Wine is ok on the IBS and low carbs too; one or two now and then mind you. But as I stated earlier, the migraine makes that one tougher. However, alcohol is out-out now because my rheumy upped my blood pressure med, which is also a migraine deterrent and also a Raynaud's treatment. That's enough interactions with alcohol especially since this one can become either ineffective or it will reduce the workings of the heart. Kinda want to keep that one working for me, thanks. So I'm on the wagon completely for a while to see how this med does. I figure after a few months off the alcohol, I can then talk to my GP about it and get his thoughts. By then though, I might not want alcohol at all.

Or this could happen.

Just kidding.

Currently, I am avoiding a sleep study. My rheumy thought it'd be worthwhile since I am fatigued and the options for lupus treatment are mostly for the active inflammation, not the fatigue. Benlysta was supposed to treat the fatigue, but that didn't go well. Of course, the fact that I have the meds that mess with my sleep couldn't possibly be a factor in the fatigue, ya know. So, I looked for ideas to add to my already long list of good night's sleep strategies. I have blackout curtains. I go to bed at the same time each night. I have an eye mask if I feel I need it. My room isn't that hot; we have the heat set to go lower overnight making the room is fairly cool. I never drank alcohol or ate spicy food or caffeine before bed. But I have started to sleep in socks. Apparently it's a thing to help sleep. I also do 4-7-8 breathing if my mind won't shut off. I've stopped looking at my phone before bed. I don't do anything but sleep in the bed now; well, except for nookie. But that doesn't count. I really don't think sleep apnea is my issue and sleep studies sound horrendous. I figure if I work on my weight and stick to my current sleep strategy, I should be able to avoid a sleep study. Let's be honest, have you known anyone to go in for a sleep study who didn't come out needing one of those damn machines? Me either. I would even take up didgeridoo before a sleep study. Yes, playing the didgeridoo is a thing for sleep apnea. 

Note the lack of snoring. This is the goal.

But one thing I can't stand is the judgy-ness of others. If I dare to eat a pear, I will. If I want a glass of red wine with an anniversary meal, I will. I don't need someone else looking down on me for not doing enough to manage my conditions. I don't need someone lumping me in with the gluten-free non-Celiac crowd fadsters because I have a flour taco. I don't need anyone else's judgment because I do enough on my own, thank you. Don't step on my self-flagellation. I got it covered.

Et Tu`, Moose?