Hi y’all! This is Rosemary, Andrea’s sister, posting here. She’s a little indisposed right now. And by little I mean a lot, and by indisposed I mean sleeping. 🙂 She says for the first time in years, she is able to sleep deep and feel rested when she wakes up. Our doctors say sleep is healing, so we think this is a good thing!
It looks like she left y’all hangin in the airport. So I will do my best to update y’all on everything since then.
Her appointment in Arizona was interesting. The doctor there takes a whole different approach to this sickness thing. But, in a way that’s encouraging because we’ve exhausted every other option and she’s still sick. She informed y’all of the protozoa that showed up in her blood work. In short, the doctor in Arizona didn’t know what it was, other than a similar one showing up in India. Her PCP said perhaps one day, they will be able to diagnose this unknown protozoa and name it bontrager after her.
How do you treat something you can’t identify? Mr. Arizona is going about it as he treated other similar cases. For one thing, she is going on a no-fat diet to starve the parasite. That means not even healthy fats like olive oil and avocado. She is also going on a plant-based diet. So basically no meat or animal products, no refined sugars, and no gluten. Yes, it is very hard to cook this way! We are so glad it’s summer and we can get fresh fruit and vegetables from the garden. She has been on it for about three months now, and bless her heart, is getting very tired of such a restricted diet!
The challenge comes in when trying to mix the two diets. She can’t have dairy, so we try almond milk, which has 5% fat per serving. On the other hand, we can get non-fat cows milk. She can’t have white flour but the alternatives are coconut flour (5% fat), and almond flour (23% fat.) She obviously can’t have peanut or almond butter (not even the organic brand!). There are two items that make me happy. Both maple syrup and xylitol (sugar replacement) are 0% fat and they help a lot with sweetening things up! I could write forever about the things we’ve learned since she started this diet but i’m guessing it won’t interest you so i’ll move along. You’re welcome. 🙂
Sauna. Mom and I are pretty hopeful about the sauna, but lets just say Andrea isn’t too cracked about it. We bought an infrared sauna at the beginning of the year. It’s an amazing way to detox. We feel part of Andrea’s problem has been, we haven’t quite understood the importance of detoxing. It should be common sense right? I’m sorry to say that we missed that major point. She has been using Cholestyamine as a way to detox but we’re hoping the sauna will move things along faster. The reason Andrea doesn’t like the sauna? It sends her into a seizure every time. Her doctors stress the importance of it though, so we keep pushing it. The key is to build up slowly. When she started, she could only do about 3 minutes at 90* F. She’s worked up to 15 minutes at 100*. We’ll take any little improvement we can get!
We have a family friend that has offered to do a free chiropractic treatment every week. That has been such a blessing! Joe takes her to Spartanburg every Tuesday night. This is no ordinary chiropractor either, he trains other chiropractors and is quite brilliant! Plus he is from Australia and has a killer accent. 🙂 Speaking of Joe, it’s such a big comfort for us to see our sister/daughter in such good hands. He stays optimistic and is ever encouraging and does so good about meeting her emotional needs.
I think she is doing pretty well overall. She goes to church, although she sits in the back with someone. She comes home every day at three and mom feeds her no-fat, no-sugar, no-gluten, and vegan sorts of meals. After she eats, she goes into the sauna for fifteen minutes, has a seizure, then mom takes her home and she usually sleeps it off. She tolerates crowds and noise so much better. The other night we hosted a baby shower for my sister-in-law (I’m gonna be an aunt soon! happy dance!) and she sat right in the noisy, crowded living room and only had one seizure. Her seizures are mostly the absence seizures which sometimes she can pull herself out of them and isn’t quite so confused afterwards. Sometimes she has the twisting kind but she usually heads them off with ativan before they get too bad.
When she has these absence seizures, her eyes glaze over and she will fall if she can’t pull herself out of them, or if we don’t stop it. It used to only take a quick wave in front of her eyes to get her to snap out of it, but recently her eyes have begun to roll back and we have to shake her head a little or use cold water for the longer ones. The longer she is “out” the more she tends to be very confused when she snaps back. She will often speak in an exaggerated whisper, call Joe “sir” and use very formal words like “mother” and “father.” Long ago, we learned in order to cope in these situations, you have to laugh or cry. Crying isn’t very practical most of the time. Who wants to spend five minutes in a parking lot crying as you try and convince her to get in the van as she emphatically whispers “Stop treating me like a child!” She also doesn’t mind if we laugh so that’s our coping mechanism of choice.
That is the current state of the union! If someone has a recipe you think is inside her limitations, please share! Mom is having a hard time coming up with food ideas.