- Brain fog: In November, I noted that "the fog in my brain is about 60% gone. I can concentrate and remember things". The brain fog is 90% gone.
- Mental Fatigue: In November, it was about 40% better. Today, it's gone. Things don't feel as intense as they did at first but I have also gotten more used to stimulus.
- Physical Fatigue: The only time I deal with unusual physical fatigue now is when I eat something weird that knocks me out or makes my muscles weak. Otherwise, 100% gone. Also, I am uncomfortable sitting for long stretches at a time now. I also walk 4 times as much as I used to, have been back to the gym, and have been doing fun things like hiking and sledding.
- Constant pressure on the top and sides of my head: This only returns when I eat something weird, but otherwise, it's gone.
- Chronic hip pain: Gone.
- Plantar fasciitis: Was 50% better by November 6, is about 90% better now. I have been walking everywhere. Sometimes I'll do a walk and have more energy and then do another walk, and my feet don't hurt.
- Leaden limbs: gone unless I eat something weird
- Inability to wake in the morning: This is one of the most discouraging symptoms from narcolepsy for me because people think I am lazy. I reported in November that it was about 25% better. Now it is about 75% better.
- Constant depression: Gone. Sometimes if I eat something wrong, I can tell the next day because I feel hopeless, but it goes away in a day.
- Asthma: It was about 50% better in November and it's about 60% better now. It's a little slower going than I would like but I can't complain.
- General Fatigue: About 50% better.
In November, I hadn't tried to reintroduce any foods. I discovered through trials and tribulations of food reintroduction this past month that I can't eat wheat, corn or dairy. I also found out randomly after having a reaction to some contact lens solution that my body has problems with preservatives (My Opthamologist, Dr. Kracher, told me it was "definitive", that he has a few other patients like me, and to avoid eating and using preservatives). My reactions to some things are freaky.
Food sensitivities are no problem at all when I am cooking for myself- in fact, I have started to cook a lot more. I have made the most excellent dinners- like the pork loin with Indian spice rub served with a tart cherry gravy, or the gluten-free chicken pot pie. I have found the Common Market to be awesome because they don't carry food with preservatives, and have a lot of wheat, dairy, and corn-free products. They really cater to people like me. I was telling this to Sally Fulmer from the Common Market the other day in gratitude, only to find out that she has a gluten sensitivity and recovered when she stopped eating it. I find that when I cook my food, avoid too many sugars and carbs, and focus on eating lots of fresh vegetables, I feel like a brand new person.
A problem for me is eating in restaurants. There are very few places I can eat and feel safe. And of these places, there are very few dishes I can eat. This is not a big deal for someone who does not go out to eat much but it's a big part of my life. Or it was. Here's what I can eat in downtown Frederick:
- Five guys: A burger without a roll with sauteed onions and tomato. Luckily I didn't have reactions when I reintroduced tomatoes and beef. Buy the way this isn't the most exciting meal but I was able to go out one day with my staff.
- The Orchard: Grilled chicken house salad with no soy (haven't tried to reintroduce it yet) and the chicken curry over rice.
- Juliet's Italian Market: Curry chicken salad, artichoke antipasti, tuna fish salad on regular salad.
- Volt: anything made gluten and dairy free. I have had so many dishes there I can eat- they will really cater to people with special dietary needs. I've had sturgeon, pork, chicken, hanger steak, bass, mushroom risotto...
- Moxie: Tea. Yeah I know other people serve tea. But I like that place.
- Lucky Corner: Chicken Pho and maybe the Chicken curry.
I am not obsessed with chicken curry, it's just that it's made with coconut milk rather than dairy and wheat, and I can eat it. Literally, those are all the restaurant foods I have found so far. Not to say there aren't others. I have tried many things that looked safe, only to have a reaction later. Here's the typical reactions. The exact reaction differs depending on the food:
- Instant headache
- Head, neck and shoulder ache within 20 minutes of eating something
- Feeling my stomach turn/flip, feeling nauseous
- Feeling pain creep into my wrist, hip and knee joints within 20 minutes of eating something
- Weakness in legs the day after eating something
- Not being able to put the offending food in my mouth physically or feeling a shock run down my arm to my had when I touch it. I know this is really weird and I can't explain it.
- Feeling bombed-out exhausted within 20 minutes of eating something. This happened at a dinner out with friends and was kinda embarrassing.
- Burning mouth, tongue and lips. Why I never felt this before I eliminated food and reintroduced it, I don't know.
- Feeling depressed the day after eating something
- Asthma the day after I eat something
I have strategies now to help me avoid getting into situations where I am really hungry and have no good options:
- Eat before going out, and then just have fun with friends and drink water. This way I still get to go out and enjoy people's company.
- Drink a protein shake before going out, so that I am not hungry but not totally full. That way if there is something I can eat then I have the option.
- Carry Rawnola bars in my purse. I have tried every other kind of bar and they all make me feel terrible because of the carbs and sugars in them. Rawnola bars have only 4 g sugar and 15 total g carbs including fiber. I am going to try to start making my own granola and see if it's good.
- Invite friends over for meals. Living alone, I like to have company, and my friends are more than willing to eat at my house. They also return the favor- one friend brings bags of potatoes from his farm and tropical fruit salad, another helped to shovel out my car from the recent blizzard. I have been a little concerned that my new tastes won't suit people (I am adverse to most sugar, for example, unless it's fruit) but have been pleasantly surprised. My friends that are athletes are excited to eat my food because their bodies recognize it as good fuel; I find this very rewarding.
I thought I would have problems visiting at other peoples' houses but I have avoided the dinners. A friend of mine made dinner for a couple of our friends the other night and I tried to dissuade him from trying to cook for me. But he was unyielding and went ahead and made me the most beautiful composed plate with a beef stir fry that had persimmon slices as garnish. I don't know how he figured it out but I could eat everything in it. I was floored. THANK YOU.
I think I might have an inner athlete coming out. Long after high school was over, my sister, the athlete, told me that she had always resented me. Her track coach told her that if she had longer legs, she could have been in the Olympics. I had the longer legs. I was always reading, always tired, not vital. But here I am emerging from this cocoon and lo and behold, I have lost 20 pounds in the past 2 months and am discovering that I am very strong. My athletic friends have adopted me and will be helping me to get my body into shape. I am so excited about this!!!
I am worried about going to Bogota, Colombia in the beginning of January for my sister's wedding. How can I prepare for that? I am really scared, actually. How can I plan my meals when I am at the whim of other people? My sister is already there, so I am sending her an email in hopes that we can figure something out.
Anyway, this has been my update and observations from the past two months. My life is changed. I am so excited that local food is such a huge part of this plan, and am thankful for the farmers in my life who create the food that my body thrives on. Your work means everything to me.