Author: denisedaniel

One of the surprising things about having food allergies is the fear of getting sick and whether the process of getting well will make you sicker. It’s much more complicated than you might imagine.

In January, I managed to get either bronchitis or pneumonia, which affected my asthma to the point that my nurse practitioner considered admitting me to the hospital because they couldn’t get a peak (air) flow at first. I did a nebulizer treatment in the office and then talked them out of admitting me. Why did I talk them out of admitting me? Well, yeah I hate the hospital, who doesn’t? But my first reaction, was “what would I eat? There’s no way they could serve me corn-free food, let alone deal with the other 12 allergies.” My second reaction was “I’ll get a rash from the sheets; there’s coconut in their detergent.” And although I’ve saved the Corn Allergy Girl’s Emergency Room Safety Doc to my phone, I was there by myself and wasn’t sure I had the air to self-advocate for what I would need at the hospital.

I didn’t have the money to pay for compounded medication, as our insurance doesn’t cover it and I didn’t know how long it would take to get it compounded. I ended up choosing the lesser of two evils and taking three regular medications, all of which had corn. Although it did help me breathe and get over the bronchitis or pneumonia, it also caused me to have a corn reaction the entire time I was on the medication. So I swelled up like I had gained 20 pounds, broke out in cystic acne, broke out in blisters on my foot so that the bottom of my foot had open wounds in a 2 inch square area, had terrible brain fog, and had insomnia during the whole time. And it took me weeks to get clear of the corn reaction, once my lungs had cleared and I could breathe again, and for my foot to heal. 

This raises the question of what will happen when I really have to be admitted to the hospital. I’ve known that I really need to have a plan in place, but I still haven’t gotten myself together. I would need safely-laundered sheets, pillow cases, and bed clothes; safe toiletries; a list of the foods and derivatives to which I’m allergic; and actual safe food and drink. I keep putting it off, but one of these days I’m going to need it and then I’m going to be sorry that I didn’t get around to doing it. 

One of the things I find most disturbing about seeking medical care is that the medical profession just doesn’t seem to know what’s in the stuff they prescribe. I love my nurse practitioner, but when I needed an antibiotic, she asked me which one was corn-free. I had some testing done at the time of my annual physical and I turned out to be low in Vitamin D and magnesium. The nurse called to tell me the results and to tell me to get a supplement. I laughed and said I wouldn’t be able to find one that was corn and coconut-free. The nurse, in an attempt to be helpful, called back later and left a message with several suggestions. Then I had to call her back and tell her that half of the ingredients in the ones she had suggested were corn and coconut derived. 

I went to the optometrist in December. She said my eyes looked irritated and I needed drops. I said that I was allergic to milk, corn and coconut (these are the most prevalent of my allergens in medications). She handed me three sets of drops so I could look at the ingredients. None them were safe. I tried to seek alternative care through a naturopath, and she wanted me to go on supplements, and I again laughed. And sure enough, all of the ones she wanted me to take had corn and/or coconut derivatives. I got such a bad vibe from her lack of knowledge and insistence that it was a good company making the supplements that I never went back.

Before I was diagnosed with the corn allergy, I was having a lot of trouble with brain fog to the point that I was literally concerned that I was getting a brain tumor or that I had early dementia. I was forgetting the names of people I saw every day and the names for every day objects, or saying the incorrect word for an object. Some days it happened 25-30 times by noon. I went to a neurologist, an audiologist and did a sleep study. Then, being severely unhappy with the neurologist who didn’t listen to me, went to another one, and got sent to have a dementia evaluation. During this time I was told that it was sleep debt from my insomnia and mild sleep apnea. I was prescribed 3-4 different insomnia medications, none of which had the slightest effect. So I decided to discontinue treatment. Guess what? When I went off the corn, the brain fog went away, one of my two types of my insomnia went away, and I’m willing to bet if I ever went through the excruciating process of a sleep study ever again (unlikely in the extreme) that my sleep apnea will have diminished as well. I’ve dropped about 20 pounds or so, and gone down three sizes, without trying to since going off the corn, wheat and chicken after the last round of testing. Since then, every time I’ve been exposed to corn accidentally, I get insomnia that night, and for the next couple of days I lose my words. Sounds like a causal relationship to me. 

The problem with all this, and which will be discussed in greater depth in a future post, is that I cannot depend on my medical professionals to know whether medical issues I’m having are related or not related to food allergies. If they are not related, I cannot depend on them to know how to treat the problem given my food allergies, what’s available under my insurance plan, and what pharmaceutical companies actually make. And with the amount of self-advocating and figuring it out myself I do now, what happens when I really get dementia or can’t communicate, and have to go to the nursing home?  Skydiving, cliff diving or eating fugu in my old age sounds better all the time.

Now, my allergies aren’t quite as severe as Denise’s, and I’m not allergic to corn or coconut, which are in everything. In some respects, this is great, because I also have ongoing idiopathic (the technical term for “we have no idea why”) vitamin and mineral absorption issues, and the supplements I take are part of what keep me functioning. All the ones Denise and I have looked at together contain corn. ALL of them.

This past winter, one of my doctors did a full vitamin and mineral evaluation, and we discovered some really random deficiencies. It took three tries before we found a B-complex I could take — the first one that she recommended had an ingredient I was allergic to in it — and she’s the one who did that round of testing. I took the second one and got a cold. Or, at least, that’s what it felt like — one of those colds where, you feel fine, and then, sort of suddenly, your head is stuffed, your nose is running, your eyes are glassy and teary. That was a Thursday afternoon, and I called in sick the next day. Weirdly, though, around 5 pm, I started to feel fine. I guess there are 24-hour stomach viruses, so why not a 30-hour cold? Felt fine all weekend: I’d left the supplement on my desk. When I remembered taking it again, it was Tuesday. Same pattern, exactly, except this time I had to leave a meeting because my head was filling with snot. 30 hours later? Fine. To me, it was absolutely an easy call — allergy reaction — and one I had to convince my doctor of. We tried a third B supplement, and this one is fine, but you can bet I read the label about 200 times before taking it.

Our insurance company switched prescription providers this year, and of the three medicines I take, all of which are available in generic forms, this new company provides different generics, and at least one of the three contains milk or a milk-derivative, which is causing minor issues. Again, for clarity’s sake — I do not (probably) have a milk allergy, just severe lactose intolerance. I’ve been taking this drug for three months anyway, because being off of it causes more issues than being on it with milk, and I couldn’t get in to see my doctor until April anyway, to see if there is a way to ask for a generic without milk without getting a DAW (dispense as written) prescription for the non-generic drug which could cost me 70 times more. Yeah, that’s not a typo — it’s the difference between paying $1 and $70.

Milk and wheat are the basis for a lot of fillers used in pharmaceuticals, and there is no requirement that these be clearly labeled, anywhere, nor that pharmacists, prescribing doctors, or nurses have any knowledge of the allergens that may be present in the drugs they prescribe. So even if you think you are safe because your doctor is aware of your allergies, you are not. You need to ask the doctor to check potential allergens (if your doctor won’t or can’t or doesn’t know how, that’s really not great). Then ask the pharmacist again. And go online and check. If you’re on a name-brand drug, checking isn’t too bad; with generics, it can be kind of awful, and worse if the generics can be switched up any time the pharmacy company chooses.

Frankly the vigilance is tiring, and it’s tempting to castigate yourself for every slip. I try to remember how unhelpful that is, but stock it up as a reminder that no one else will advocate for my health the way that I do, partly because no one else has to deal with it when I get sick.

More Life With Food Allergies! You’ve been holding your breath in anticipation, haven’t you?

This week, we’re planning to discuss things you can do with your significant other or your friends or even your family that do not revolve around food. I know, it sounds crazy that food would be so central to socializing, and it does not seem that way until you can no longer easily eat anything anywhere.

As I said in the past post, I’ve found someone who thinks that finding things to do that don’t involve food is actually kind of a fun challenge. While our first date was a rather traditional dinner out, we’ve followed that with a rather eclectic collection of events that have, for the most part, been free. Many of them are somewhat educational, which I find interesting, and they usually provide good fodder for conversation afterwards. Stand-by — I’m going to start waving my nerd flag high and proud.

Because we’re in New Hampshire, my specifics are keyed to this area, but many of them are broadly applicable. If you can approach your own town or region like a tourist, you may discover new things.

We’ve seen only a few movies, but then popcorn, like pizza, might be one of the more evil tempting smells of foods you cannot eat. Streaming and DVDs do offer more options as far as getting your own snacks. With all of the TV series you can stream, appointment viewing of a TV series is really easy to do. But movies are a classic date night that do not need to revolve around food.

Museums are a great option — art, science, or history. Now, upfront, I love museums — I have degrees in art history. But what I think is great about going to a museum with someone is that it gives you something to do while getting to know one another. Museums can be a bit steep for entry, unless you’re near DC, but check with your local library to see if they have either membership cards you can check out or discount passes. Locally, we have the McAuliffe-Shepard Discover Center (planetarium and museum), the New Hampshire Historical Society, the Millyard Museum, a few local galleries, and the Currier Museum. Some museums offer free or discounted entry on certain days or at certain times. In fact, did you know there is a free museum day sponsored by the Smithsonian? No date has been announced yet for 2014, but stay tuned. If you’re in a major city, maybe you’re on this list of free museum days.

Author readings at a local bookstore (here in Concord, Gibson’s is one of my favorite places) are often free and usually interesting whether or not you’ve read the book (or intend to). They often have a calendar available online. The library will often have a few events as well, though my local library tends to be geared towards the younger and older crowds (school-aged, teens, and retirees).

Meetup may offer some options finding like-minded groups doing trivia nights, company tours (I met a good friend on a brewery tour, though neither of us drinks), lectures, walking tours. In fact, Denise and I met through Meetup, too. If you’re science-oriented, science cafes, going by a variety of similar titles, exist in three New Hampshire towns — Manchester, Nashua, and Portsmouth — and there are a bunch in Boston — there might be one near you.

Possibly my favorite resource is the New Hampshire Humanities Council calendar of lectures, performances, and events that we’ve taken great advantage of (so much so that they might be getting sick of our names on their participant evaluations). Last year they had a series of events on constitutional issues — Denise and Corinne and I went to the first, and I went to the last with Jack. Maybe you’re thinking that civics discussions wouldn’t be all that fun or interesting; I disagree — I thought they were pretty fascinating. But they also have history-related performances, literature recitals, and there’s an upcoming one on comics.

If you want to see a huge variety of events — theatre, arts, auctions, shows, exhibits, festivals, classes, and more — and you’re in NH, southern ME, or northern MA, you can try the NH365 website — search by region, type of event, or date.

If you’re the type, there’s also the great outdoors — plenty of local hiking or walking trails, biking or snowmobiling, whatever you’re into. Just standard caution — don’t hike off into the wilderness with someone you’ve never met before. Make common sense common again. Me, personally, I tend to prefer the outdoors when seen from the indoors for about 10 months of the year, but your mileage may vary.

With a little effort and creativity, there is plenty to do without food being at the center of everything. And hey, if you’re looking for another way to celebrate Friday, one that doesn’t involve cupids and hearts, can I suggest Ferris Wheel Day or Bulgarian Wine Day?

I grew up in rural Maine, and I’m used to driving all over hell and gone to go do things. Also, I went to school in Boston and it’s only about an hour or so from Manchester, so it’s fun for a day trip. The City of Boston site has a list of Free (and almost free) Things to Do.  You might want to check your city’s website to see what they recommend. Also check out Boston.com’s Things to Do section.  You can search by geographical area of the city and by category.

Since there are so many colleges in the area, you can to their websites and see what’s going on for lectures, readings, performances, concerts and events as well.  Since I went to Wellesley for undergrad, I had to go check out the stuff going on at Wellesley, but you can check out Harvard, MIT, Boston College, Boston University, Northeastern, etc, etc.  Also locally in New Hampshire, you can check out Saint Anselm College, UNH, and Plymouth State University, 

I always love to go the New England Aquarium or if tech is more your thing, go to the MIT Museum, I hear they have holograms and robots (They do, and it is awesome. — MK). Or go check out the Museum of African American History, the Peabody Museum of Archaeology and Ethnology at Harvard University, the American Textile History Museum in Lowell. You can do the standard stuff like the MFA, the Isabella Steward Gardner Museum, and the Museum of Science, but why not check out the weirder quirkier offerings Boston has?  Or check out the less traveled stuff in your city?

The last thing I’d suggest is seeing what community theater groups your area has and what performances they might be putting on.  I just went to a local production of A Midsummer Night’s Dream that was really good in Dover, New Hampshire. You can check out this website for local theater in New England.

We hope this gives you some great ideas; go have fun!