Unfortunately for my family , this gluten-free lifestyle change affects them, too. We are a busy family. We homeschool. My husband works from home. We are always together - for better and for worse. To make sure our children do not become 'THOSE Homeschoolers' (you know the ones I mean - the cliché, grind your own grain, sew your own clothes, remove yourselves from society homeschoolers), we let them participate in several extracurricular activities. First and most importantly, we are active in our local church. Second, we are all active Girl Scouts (yes, even my husband). And third, we are active in sports, which I count as the Girls' PE. They average 1-2 hours of dance or softball 4-5 days per week.
This schedule does not allow for many home-cooked dinners around the table. We eat out a lot. Our main Family Meal is usually lunch, and dinner can be anything from a cup of cereal in the car to Moe's burritos or Chick-fil-a en route from ballet to Wednesday night services. It just depends on the day. All of this to say, not only has this gluten-free thing changed WHAT I can eat, it has also changed where and when we all eat.
So what are we doing? How are we handling this acute change? As best we can. I've given away most of my favorite baking mixes and go-to quick meals. I've stocked the pantry with just about every rice flour and potato flour and almond meal I can find, and I am slowly relearning how to cook. We are eating a lot more cereal for dinner, and my Girls are getting much better at fending for themselves. If I have a meeting or something else going on, my husband takes them to our favorite restaurants where I'm afraid I couldn't resist the yeasty goodness of the fresh baked bread. We are eating at home more. We are eating much later at night (you can still only do so much when everyone is gone from 4-7:30 every night). We are waiting for dance and ball to be over so that we can figure out a new schedule that works for all of us.
In the meantime, we are praying daily that this works and that my immune system decides to function and fight disease again. Because really? As much as I like bread, I like being not-sick and spending time with my family even more. Our God is a good God, and I truly believe He can do this for me. All I have to do is wait and hope. And if He decides to make me stay this way, I'll gripe and moan and complain for awhile, but then I'll suck it up and just deal.
Showing posts with label immune system. Show all posts
Showing posts with label immune system. Show all posts
Tuesday, April 1, 2014
Sunday, March 30, 2014
Man Shall Not Live By Bread Alone...and Neither Shall I
After I saw the Heme/Onc (short for Hematology/Oncology) guy, I walked out the door not expecting to hear from him until my follow-up appointment in 6 months. It was lunchtime, and we were hungry, so my husband and I decided to grab a quick, yummy brunch of deliciousness at our local Waffle House. Their pecan waffles qualify for my select life list of very favorite foods. If I had known this would be my last time to ever have them, I probably would have ordered a dozen and eaten until I couldn't stand up any more.
Remember how I talked about Zebras and Interesting Patients the other day? Remember how I said you don't want to be one, but that I am one? Well...after I left my Heme/Onc appointment, my doctor spent some time researching what could be causing my immune system to shut down. He was unable to find a link between this and my MS, but he did find ONE STUDY being performed at BMS looking at a possible link between my particular immune problem and wheat allergies. Has this research been completed? No. Has this research been published in a reputable, peer-reviewed journal? No. IT'S STILL ONGOING, and there is no way to get me into the actual trial. So what does my hematologist decide? He wants me to try a wheat-free (aka gluten-free) diet. It will be our own, personal experiment. I literally felt Life As I Know It come crashing down around me.
I received this life-altering phone call around 4:30 on a Monday afternoon. I was not pleased. But God has a serious sense of humor. A very dear friend of mine has Celiac Disease, the only absolute medical indication for a gluten-free diet. Gluten-free can completely cure Celiac and eliminate its long term side effects. She has been gluten-free for several years and has been wanting me to experiment with the diet almost since the day she started it. Obviously, since bread is my very favorite food (I have literally lived on bread alone for months at a time while travelling overseas), I do not want to give it up. I like bread. Bread makes me happy. Anyhow, back to God's sense of humor...this friend was sitting next to me at my kitchen table when I got the call from my doctor. I instantly went into mourning. She became almost giddy with excitement.
After my initial shock and despair wore off, I went into my typical OCD, Type A mode. In the last 3 weeks and 4 days since I got this unpleasant news, I have read more books and cookbooks and websites and blogs on gluten-free cooking than I can count. I have dreamed about bread and pizza and fried chicken and yeast rolls and icing cake. I have fixated on finding acceptable substitutes for my favorite foods. So far, I have found a good pancake recipe, a decent oven-fried chicken recipe, and several awful bread recipes...complete with some flammable loaves. I'm a work in progress, and I know God has a plan for this. Right now, the risk of blindness and herniation and a nonexistent immune system are good motivators.
Remember how I talked about Zebras and Interesting Patients the other day? Remember how I said you don't want to be one, but that I am one? Well...after I left my Heme/Onc appointment, my doctor spent some time researching what could be causing my immune system to shut down. He was unable to find a link between this and my MS, but he did find ONE STUDY being performed at BMS looking at a possible link between my particular immune problem and wheat allergies. Has this research been completed? No. Has this research been published in a reputable, peer-reviewed journal? No. IT'S STILL ONGOING, and there is no way to get me into the actual trial. So what does my hematologist decide? He wants me to try a wheat-free (aka gluten-free) diet. It will be our own, personal experiment. I literally felt Life As I Know It come crashing down around me.
I received this life-altering phone call around 4:30 on a Monday afternoon. I was not pleased. But God has a serious sense of humor. A very dear friend of mine has Celiac Disease, the only absolute medical indication for a gluten-free diet. Gluten-free can completely cure Celiac and eliminate its long term side effects. She has been gluten-free for several years and has been wanting me to experiment with the diet almost since the day she started it. Obviously, since bread is my very favorite food (I have literally lived on bread alone for months at a time while travelling overseas), I do not want to give it up. I like bread. Bread makes me happy. Anyhow, back to God's sense of humor...this friend was sitting next to me at my kitchen table when I got the call from my doctor. I instantly went into mourning. She became almost giddy with excitement.
After my initial shock and despair wore off, I went into my typical OCD, Type A mode. In the last 3 weeks and 4 days since I got this unpleasant news, I have read more books and cookbooks and websites and blogs on gluten-free cooking than I can count. I have dreamed about bread and pizza and fried chicken and yeast rolls and icing cake. I have fixated on finding acceptable substitutes for my favorite foods. So far, I have found a good pancake recipe, a decent oven-fried chicken recipe, and several awful bread recipes...complete with some flammable loaves. I'm a work in progress, and I know God has a plan for this. Right now, the risk of blindness and herniation and a nonexistent immune system are good motivators.
I'm a Zebra...Or...Lightening Struck More Than Twice
On top of everything else going on in the last week, my immune system is shutting down. I had my routine labs drawn at the end of January. One of the tests showed that my IgG4 is almost nonexistent. A repeat of the lab confirmed the results (In medicine, if we get a totally unexpected, weird lab result, we automatically repeat that lab. You never know when the wonky number is the result of a lab error. Better to be safe and recheck than to start chemo or other treatments when it was just a mistake in the lab. And just so you know, this is Good Medicine, not CYA Medicine.)
My PCP/neurologist at BMS set me up to see the local chief of Hematology/Oncology. He reviewed my history then gave me a look I've become way too familiar with over the years. He was confused. Perplexed. Intrigued. Now let me tell you...all the magazine articles and TV segments will tell you that you want a doctor that cares about you and that is interested in you. THAT IS NOT TRUE!!! They are wrong. Yes, having a caring, compassionate physician is a good thing. But you DO NOT want to be an Interesting Patient!!! Interesting Patients do not fit the mold. They are anomalies. They don't fit neatly into the puzzles we are mentally piecing together while we talk to you. They are the square pegs in the round holes. They get us excited to do research and look things up. They are not easy to diagnose and treat.
Interesting Patients are also called Zebras. There's a saying we are taught early in med school. It's actually one of my computer geek-husband's favorite factoids and quotes. No idea why. He just likes it. "When you hear hoofbeats, look for horses, not zebras" - the implication being that horses are common (like colds, ear infections, the flu), and zebras are not (like Ebola virus, West Nile, and rare, unnamed platelet aggregation disorders). When you find a Zebra, it is safe to assume that they will have only that one diagnosis. Zebras are rare. Multiple Zebras are extremely rare (ex. It would be extremely unusual and interesting to find a patient who had Ebola virus, West Nile, AND the rare platelet problem at the same time). Guess who is that Interesting Patient with Multiple Zebras? ME!!! It's so bad, my neurologist at BMS wore her zebra scarf this week at my appointment in my honor. It did make me laugh, because really? Only medical people would get the joke.
Anyhow, my immune system is shutting down. I have MS. And now I have pseudotumor cerebri. All unusual diagnoses that are not fun to live with or treat. Only the pseudotumor was easy to diagnose. The MS took 9 months from symptom onset to diagnosis, and I am considered a 'quick' diagnosis. We are still working on the immune system thing. I'll let you know more about that later. Until then, I have to get to the ballpark to see my Kid play center field. If you have any questions about this post or any others, I'll do my best to answer them from the Doctor or the Patient side, whichever is more appropriate.
My PCP/neurologist at BMS set me up to see the local chief of Hematology/Oncology. He reviewed my history then gave me a look I've become way too familiar with over the years. He was confused. Perplexed. Intrigued. Now let me tell you...all the magazine articles and TV segments will tell you that you want a doctor that cares about you and that is interested in you. THAT IS NOT TRUE!!! They are wrong. Yes, having a caring, compassionate physician is a good thing. But you DO NOT want to be an Interesting Patient!!! Interesting Patients do not fit the mold. They are anomalies. They don't fit neatly into the puzzles we are mentally piecing together while we talk to you. They are the square pegs in the round holes. They get us excited to do research and look things up. They are not easy to diagnose and treat.
Interesting Patients are also called Zebras. There's a saying we are taught early in med school. It's actually one of my computer geek-husband's favorite factoids and quotes. No idea why. He just likes it. "When you hear hoofbeats, look for horses, not zebras" - the implication being that horses are common (like colds, ear infections, the flu), and zebras are not (like Ebola virus, West Nile, and rare, unnamed platelet aggregation disorders). When you find a Zebra, it is safe to assume that they will have only that one diagnosis. Zebras are rare. Multiple Zebras are extremely rare (ex. It would be extremely unusual and interesting to find a patient who had Ebola virus, West Nile, AND the rare platelet problem at the same time). Guess who is that Interesting Patient with Multiple Zebras? ME!!! It's so bad, my neurologist at BMS wore her zebra scarf this week at my appointment in my honor. It did make me laugh, because really? Only medical people would get the joke.
Anyhow, my immune system is shutting down. I have MS. And now I have pseudotumor cerebri. All unusual diagnoses that are not fun to live with or treat. Only the pseudotumor was easy to diagnose. The MS took 9 months from symptom onset to diagnosis, and I am considered a 'quick' diagnosis. We are still working on the immune system thing. I'll let you know more about that later. Until then, I have to get to the ballpark to see my Kid play center field. If you have any questions about this post or any others, I'll do my best to answer them from the Doctor or the Patient side, whichever is more appropriate.
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