A little background for those of you who missed it... Over the last few years my allergies (and therefore my asthma) have gotten a little bit worse each year. Worse to the point that it stopped me from doing every day things like sweeping the floor or planting flowers in the garden or visiting my grandson on a windy day. Worse to the point where my winter respiratory infection was counted in months, not days or even weeks. Worse to the point where prednisone became my best friend as well as an enemy.
I had lots of appointments and regime adjustments from my doc, and I tried new ideas that friends and family have found helpful... like Oolong tea which unfortunately didn't work for me. There is no new miraculous allergy medicine I haven't tried, no alternative medicine I haven't tried, no completely whacked out theory I have not at least considered trying (and many I did!)... and trust me, folks have come up with a LOT of suggestions. I think those bases have been well covered.
Doc tried to get my insurance company to cover Xolair, a medication designed for people with allergic asthma. We're still arguing the point, but they've refused to cover it because I am too allergic for their dosage table. Yes, I am 'off the scale' again in that my IgE is too high for their recommended dosage. What this really means is that to be effective against my high IgE they'd have to give me a larger dose than safely recommended, and that is enough for the insurance company to say no. Since I would need a dose once or twice a month for the rest of my life, at about $2,500 a pop... well let's just say that ain't happening!
In December, in an attempt to ward off the dreaded winter infection, I started to avoid food allergens. I felt SO much better avoiding the foods that cause allergic reactions for me. It was amazing, I felt like I had regained 20 years worth of energy. I was inspired! At least until mid January when the dreaded winter infection reared it's ugly head. That infection lasted until the last week of March.
So, even though I felt better, staying away from food allergens did nothing to stave off the annual winter respiratory infection, and prednisone was once again my best friend. Like a lot of folks with allergic asthma I have two dosages for prednisone... a two day emergency or prophylactic dose for when I have a sudden allergy issue, or when I know I will have a sudden allergy issue (like visiting friends and family in Phoenix with pollution, pets, and pecan trees)... and a ten day 'let's kick some ass' dose for when the asthma has been engaged and we really have to take control.
During my recovery from the winter infection, I was on prednisone more than I was off it and that is problematic in that situation. So, the asthma improved and I could breathe (friend) but it also reduced my ability to fight the infection (enemy). I was hungry all the time, but I couldn't eat without making myself sicker from allergic reactions. The overall inflammation in my body was reduced, but bumps and bruises took forever to heal, my face got rounder, my skin got redder, my vitamin D and other nutrient levels got perilously low. I got an amazing amount of crocheting done (take a look at the blog archives!), but only because I wasn't well enough to actually get up and do anything and I also could not sleep. Long term prednisone has other more serious side effects as well so it really is a double edged sword, and it is becoming an integral part of my life.
During this time I also did a lot of experimenting with allergy free foods. I didn't find many. In fact, I found that I had worse reactions to many of the recommended alternatives than I had to the original food allergen. A great example is grains. Wheat and corn bother me, I get hives and if I eat them every day I can tell it aggravates my asthma. But, rice flour put me into anaphylaxis, as did rye, millet, and every other grain I tried, even mesquite flour. So what do I do? Avoid them all or go back to the wheat and corn that bothered me, but on a lesser scale? Your guess is as good as mine.
I have a catch-22 now. Do I avoid all the foods I know cause reactions? I've come to the realization that I can't. I can't because I literally starve myself. Doc hooked me up with a nutritionist to try to find an answer to this dilemma, and it turns out that I am only getting about 900 calories per day if I avoid 95% of my known allergens. You may think 'great! lose some weight!' but that's not what happens. What happens is that your body thinks it's starving, and it actually holds on to each and every calorie in case it gets even less calories tomorrow. After 4 months, I've not lost any actual weight at all, even though I have lost inches because the out of control inflammation is down.
In working with the nutritionist, I've learned that my biggest issue is not protein at all as I get plenty of that from the beans and quinoa... but overall calories and in particular, calories from fat and healthy carbohydrates like those found in whole grains. According to her, I need to consume 2100 calories per day in order to lose 5 pounds of weight per week (because of my size, age, etc). More than double what I normally eat in a regular day. So... those horrible, mind altering cravings I was having every few days? Starvation. My body refusing to use it's stores (of which there are plenty!) and driving me to find some real food, right now. The lethargy? Starvation. Complete and utter lack of the nutrients needed for 'get up and go'. The insomnia? Starva... no wait, that's still the prednisone.
My task now is to find the balance between avoiding allergens, using prednisone to counter allergic inflammation, and getting the nutrients I need to get and keep my body moving. It means eating something every day that I know is going to make me sick. It means giving up on the idea that I will ever feel really great again. It means I have to continue to apologize about bringing my own food to parties, even though it IS in a stylish crocheted bag. But it also means that if I plan it right, I might actually be able to eat something just because it's delicious once in a while... and that may have to be enough.