Medical Research

I heard Grace Slick being interviewed on the radio the other day and she said she has a rare neurological condition that only about 250 people in the world have--if the temperature gets to be over about 65 degrees her feet feel like boiling water has been poured over them, and look that way too. She said facetiously that nobody wants to research it because so few people have it that they wouldn't make any money.

I'd like to think that maybe they don't want to research it because they don't think it's very important--and the same thing about Burning Mouth Syndrome. Nobody's going to die of it. My stepdaughter is working on her doctorate in neuroscience at CalTech and the thought crossed my mind that she could do research on BMS. But I wouldn't ask her to. She's doing her research on Huntington's Disease--a horrible neurological disease which is always fatal. She has a good friend whose mother is dying of it now, and who has a 50% chance of developing it herself. So, which is more important?

What I Eat

Coming up with interesting, varied foods is more of a challenge now that I have the limitations of BMS. Sometimes I just have to tell myself that it's not going to taste as good as what I would like. Here's a rundown of foods I usually eat.

Breakfast - Total cereal or oatmeal, banana, peaches, milk, yoghurt, soft toast (heated in the toaster oven until the butter melts). On weekends when I have more time to cook, I eat fried, soft-boiled or scrambled eggs, cheese omelets, toast & fruit, and sometimes bacon, not cooked too crisply, or mild sausage. This is pretty much the same as what I was eating before, but I don't eat my husband's wonderful breakfast tacos (which involve homemade chorizo and lots of peppers) any more.

Lunch - tuna, hard-boiled eggs (sometimes made into salad), cottage cheese or various kinds of ripened cheeses (Brie & Cambozolo being my favorites), bread, cream cheese or melted cheese sandwiches, pear or applesauce. For convenience I sometimes have canned soup, but many have a lot of additives and preservatives so I don't do that too often. Also an occasional frozen dinner; I like Stouffer's Swedish meatballs - heartier and more filling than many frozen meals--lots of meatballs, and very tasty. Sometimes leftovers from dinner, but if there are enough we save them for another dinner. I've started eating turkey & cheese sandwiches again (my old staple)--I've found that I can eat a little tomato on sandwiches or in salad, although I avoid concentrated tomato sauces.

Dinner - We eat a lot of chicken (roasted, baked, in soup, chicken & dumplings, etc.) and broiled salmon, also steak, pork chops, hamburgers. My husband likes to grill. Black or pinto beans cooked with leftover chicken or pork, served with brown rice. I make a nice pasta dish with tomatoes, basil and Muenster cheese--I was afraid of the tomatoes for a while, but discovered that I can eat them in this dish. I'll post the recipe later. Vegetables are OK, as is salad as long as I don't use vinaigrette dressing. Potatoes, rice and pasta are staples of my diet. I'm really craving Mexican food; I might have to hurt myself soon. I can eat pizza--our favorite has a thick, fresh-tasting tomato sauce--but I pick off some of the sauce and avoid pepperoni altogether.

Snacks - I like sweets, so that's mostly what I snack on. I'm now able to eat Pepperidge Farm Milano Double Chocolate cookies, which seemed too hard and crumbly for a while, as well as some dark chocolate/chocolate chunk cookies with nuts which Central Market sells. For the latter, I pick out the big chunks of nuts and the cookies carefully, in very small bites, to keep from hurting myself on the smaller bits. Ice cream is another of my favorite snacks; it actually feels good and soothing.

Drinks - Pretty much just water and milk. Coffee and tea, even chamomile, which was the mildest tea I could find, seem to make my mouth feel dry and rough for a day or two. Once in a while when we go out I'll have a Bailey's & coffee with whipped cream. That doesn't feel bad; I guess the cream and the Bailey's dilute the coffee enough. I used to drink my coffee black and very hot; I miss that a lot.

Oral Hygiene

I had my teeth cleaned last week, the first time since I developed BMS. I was quite apprehensive about it since my mouth is now so sensitive. So they gave me a rinse of lydocaine and something that tasted like Juicy Fruit gum, but I couldn't tell that it made any difference. The cleaning was somewhat painful and quite unpleasant and my mouth felt a little worse for a couple of days, but now it seems back to normal. I had quite a bit of tartar and plaque, and my dentist told me I need to start brushing better. I had been brushing very gingerly because of the sensitivity. However, I have started brushing harder and it's not too bad.

I use an extra-soft Oral-B toothbrush and Biotene Original Mint Flavor toothpaste. Biotene does not have the foaming agent that almost all other toothpastes use, and is therefore much milder. It's also kind of weird because it doesn't foam; it just kind of dribbles out of your mouth. I used some Colgate recently in a pinch and -- ouch! I was amazed at how much stronger it seemed. I get Biotene at Walgreen's and have also seen it at Albertson's and HEB grocery stores here in Austin. I also use their mouthwash. It seems kind of strong so I dilute it half-and-half with water.

Philosophizing

I read a newspaper article recently about a teenage girl in Haiti who had just had a series of surgeries to remove a 16-pound growth from her face. There was a picture of her before the surgery, and her face was grotesquely distorted. Her throat and nasal passages were partially blocked by the growth. In order to eat she had to lay her head down on the table and shove mashed plantains down her throat. I thought, "I really don't have it so bad--I should stop feeling sorry for myself." I may not be able to eat everything I want, but I can eat in a normal manner and there's nothing wrong with my appearance.

(The girl was fortunate that a humanitarian group found out about her and flew her to Miami for the operations. Doctors in Haiti, a poor country, did not have the facilities to treat her.)

Slight Improvement, Aloe Vera, etc.

I've been too busy with the holidays to post anything lately, but in the past couple of weeks I have experienced a slight improvement in my symptoms. I've been taking Nortriptyline for about 6 weeks. I also took Neurontin for 3 weeks, but it, or the combination of it and Nortriptyline, made me dizzy. Not bad, when I was driving or working or anything, but just when I'd stoop over or get up from kneeling on the floor or something. I'm supposed to go back to the doctor on Wednesday, but I may cancel my appointment and just keep taking the Nortriptyline for a while longer and see if there is any more improvement. It's not like my doctor knows what's going to work or anything.
I'm still taking acidopholus, too, and sometimes aloe vera gel caps, although that tends to cause diarrhea so I don't want to take it too often. I tried aloe vera juice but thought it was pretty disgusting. It didn't feel good on my mouth, either.
Anyway, I've noticed a couple of tiny incremental improvements over the past couple of weeks. I don't know if the medicine is working, I'm learning to manage it better, or it's getting better by itself--perhaps a combination. But I've been able to eat some mild Italian sausage on pizza, and even a tamale at a potluck lunch. I was thrilled to be able to eat both. My mouth seems to be a little less bothered by texture, as well.