Someone requested the book title for the bread recipe. It's Artisan Bread in Five Minutes a Day by Jeff Hertzberg MD and Zoe Francois
[The one thing I will note is that the recipes tend to go sourdough fairly quickly on us. (The author's mention this, but it happens faster for us than for them, possibly because we use whole wheat flour?) As a result, we often only make half a batch, and bake everything all at once. The baked bread can turn sourdough if not enough moisture is baked out of it, but with a little experimenting, that problem can be solved fairly easy...more easily than the fast turning of the dough to sourdough.]
The same authors also have another book out (Healthy Bread in Five Minutes a Day: 100 New Recipes Featuring Whole Grains, Fruits, Vegetables, and Gluten-Free Ingredients)that I dearly want but haven't yet purchased because it's so new, so I make no claims. If it is as good as the original, however, it should be fabulous! Having gone to eating whole-grain breads a few years ago, I now love them and prefer them over white or wheat bread. The more grain, the better, as far as I'm concerned, and if the bread has nuts in it, I'm in heaven. (Thank you, Arnold Bread, for Health Nut!)
Friday, February 26, 2010
Thursday, February 25, 2010
Tips for Eating Healthy (Including Weight Loss and Fertility) on Limited Means
Over the past few months, my husband and I have been asked several questions by friends and family eating well and budgeting well while doing it. (Underlying some of these questions is the tension--sometimes an implication, sometimes a question--in the idea of whether you can be fat and still be healthy. I'd like to point out that health includes not just physical health, something that we'd all do well to remember more often.) Tonight, I finally sat down and typed up a response for a friend who asked for "a few tips" on eating well on a tight budget. She got more than she bargained for, and I realized that I should post this for everyone else out there. What follows is my "quick" advice.
My weight has always caused me some mental problems--at times more than others, definitely. I think it helped me that my family (my dad's whole family) are all kind of big, and that my dad is so large and yet so healthy. And I have such supportive family and friends, so my self-confidence was always high, and I was able to separate MY identity from my weight. Of course sometimes I think that was bad because it didn't give me enough reason to really try harder to lose weight. But losing weight is really, really fucking hard. Hey, I was in tons of pain and lost 23 pounds over two weeks. It was an almost-magical weight-loss diet! *snort* But in spite of my weight and the occasional taunting and teasing, I had to remind myself that the weight is important to me and my family only insofar as it affects my health. Regarding what other people think, you have to remind yourself that it just doesn't matter. People will judge. You can't help that. The only thing you can guarantee in life is how YOU act. (I have to remind myself and my husband of that a lot...it applies to everything in life.) But if others judge you, it doesn't matter. It can hurt, sure, but only as much as you "let" it--otherwise, their judgments and opinions don't matter one damn bit, they don't affect you at all. Just remember that. And remember that your worth lies somewhere else, not on the surface. (In other words, "Screw them.") If you feel confident and worthwhile, you will appear confident and worthwhile, no matter your size.
I know, it's all a ton easier said than done, but I've been working on DOING that most of my adolescent and adult life. You can do it. And if the people you know and call your friends hurt your efforts in that matter, consider whether they are truly your friends.
I definitely know the problems with changing your diet when you're poor. Based on income alone, we're not poor, but we have a lot of debt from my youthful spending days and other consequences of life, so the only income we can really "play with" is our grocery allotment each week. The absolute MAIN thing in food budgeting is MEAL PLANNING. We plan our meals and create our grocery list at the same time. When we don't stick to the meal plan is when we have problems feeling full and staying full and wasting food. (It takes a lot of practice, knowing what to make, how much of it to make, to make sure you're getting all your nutrition without eating too much or buying so much food that it goes to waste. It took a few weeks to get it hammered out, to know what would work well for us and what wouldn't.)
The first key thing, if you can manage it, is to try to avoid processed foods. Normally, people say this and mean that you should get only fresh foods, not prepackaged foods, but that's not always practical, given how fast "fresh" food can go bad and how expensive it can be if it's out of season. So you can get packaged foods--frozen fruits and vegetables are perfect, because they are often picked at the height of freshness and flash frozen, so they often have better nutrition than the "fresh" stuff you can buy, which is often picked early and then loses nutrition the longer it sits around. But if you buy the frozen stuff, try as much as POSSIBLE to get the frozen ones that have nothing added--no sugar, no salt (often, this is the store brand, but still check the ingredients), no high fructose corn syrup, nothing. (Kroger has great cost and variety in their frozen vegetables, and they often run 10 for $10 sales. Compared to Target, Walmart, they have the best selection and cost…at least in our experience.)
Canned fruit and vegetables are next best for F&V. They're a little worse because they almost always have to have additional things added for preservation, but you can be careful. For fruits, try to get fruits that are in their own juices, not with sugar or high fructose corn syrup (or even artificial sweeteners) added. (There's evidence that the body, when you're trying to lose weight, treats artificial sweeteners the same as sugar, and that they can even be worse than sugar, causing other cravings that sugar wouldn't cause.) For canned veggies, try to get ones that have no salt added. Sure, these often suck in flavor if you eat them as they are, but add salt on your own. Table salt is different in flavor at this stage than the sodium and salt they add for preserving, and a little of it goes a long way, so it takes a lot less of the stuff you add to give flavor than the stuff they add for preserving. (When you buy salt, try getting sea salt--I think Morton now sells it for the same price as "traditional" salt. It's a little bit stronger in flavor than the other salt, so again, you have to use less of it for flavor.) And the less sodium you're taking in, the less water you're retaining, which means you're putting less pressure on your circulatory system (and the less weight you have--water weighs a LOT!).
Fruit juice is a good way to get fruit in a pinch and for variety and for long-term storage/keeping, but it's not so great because you don't get the fiber, which helps the feeling of fullness. Plus, you have to be careful of a couple of things--get only 100% juice, try to avoid from concentrate, as they nearly always add sweeteners of some sort. Juicy Juice is usually the cheapest but very sweet (they use super-sweet juices to add sweetness).
For health and/or weight loss--try to eat whole grains instead of processed flours. This means TRY to eat breads and pastas that are made with whole grains (or whole grain flour, if you can't afford the whole grain breads). If you can't do that, try to eat breads that don't have high fructose corn syrup or partially hydrogenated oil (that tip’s for health AND fertility). [To offset the costs (and to get used to the flavors), we sometimes bought one package of normal, cheap-ass pasta, and another package of whole-grain or spinach pasta, for example.] Try to eat brown rice or wild rice instead of cheap-ass white rice. I know both of these suggestions have cost elements involved, but eating whole grains (bread and rice) means you're eating more fiber, which helps you feel full much longer, which means you're eating less, which is good for your weight and for your bank account. [Because we're both at home, we make our own bread with whole-grain flour--the bag of flour seems very expensive, but when we do the math, it works out to costing about 30 cents for a loaf of bread, and the bag makes 10 or more loaves of bread. We found a book that makes making bread EXTREMELY easy, with very little work, no days and days of letting it rise, etc...Starting mixing everything to final baking takes about 4 hours (only about 20 minutes are actual work time). And we have bread for about a week.]
Other whole grains include steel-cut oats (Irish oatmeal) instead of rolled oats. Yup, they're expensive, but again, they take much less to make you feel full, you feel full longer, and there's less of an impact on your insulin levels, not nearly as much spiking.
Make sure you're eating GOOD fats, a handful or two of nuts, some olive oil, etc., as much as possible instead of butter or grease. Fats are good for you--they also help you feel full, especially if combined with whole grains. (If you don't eat a lot of dairy products but drink milk, get whole milk instead of lower-fat. The whole milk has fewer additives (including hormones, which affect women’s bodies especially, especially when it comes to fertility, more than the men's) and helps you feel full longer. If you eat dairy products, don't make them all low- or no-fat...for the same reason.)
Here's a really good point for eating cheaply and for your health: Try to cut back on your animal proteins and instead get your proteins by eating legumes (beans, lentils, peas, peanuts) or nuts paired with whole grains. Beans (legume) and cornbread (grain) give you a perfect protein at a lot lower fat and calorie intake than a slab of meat. (Peanut butter on whole-grain bread is good, but watch out for too much peanut butter, as it is high in fat. It’s “good” fat for the needs of your body, but too much fat is still too much fat for weight loss.) Plus, you'll feel full longer because of the fiber. We have a freezer full of beef and chicken and pork that my parents give us for Christmas and birthdays and such, and it takes us a year or more to go through it all because we try to eat meat only once a day or less...it just has so many calories yet doesn't keep you as full, plus it can seriously affect your hormone levels (women MUCH more than men), which affect and are affected by INSULIN and can affect your fertility. Dried beans take a long time to cook, obviously. We buy dried beans and lentils by the cartful [that aisle, with the dried rice, is the single one we get most of our food from, aside from produce when fresh stuff is in season]. Our crockpot is the most-used appliance in our house after my laptop, which is what I do my work on.
This is all stuff we've picked up from a variety of diets over the past few years, but much of the information is covered in the book The Fertility Diet. I tried to offer a short version here...we'll call it condensed rather than short, though... :)
I know it can be hard to find some of these things in some places, particularly in small towns, but we’ve discovered that sometimes the unlikeliest of places carry great food at decent prices. In this town, Walmart often has better-quality produce than Kroger…if it’s in season. If it’s out of season, our Kroger stores usually have higher-quality fresh produce, though it costs more. In other places we’ve lived, however, we’ve had to steer clear of anything fresh at Kroger. Really, it all depends on where you live. Become familiar with all the stores in your area, don’t get complacent and think that one is always the best.
We have at least 5 crockpot cookbooks and the bread cookbook I mentioned. They help a lot. When I bought these cookbooks (on Half.com, but I used the preview feature on Amazon.com to see the tables of contents), I tried to get ones that called for foods we would be likely to have around, so we don't have to buy a lot of special foods. I’m glad to share recipes, book titles, or any other tips. And I'll be happy to answer any questions. I know I have provided a lot of information here.
What I'm trying to do is follow an eating habit that will help me eat well for fertility and for weight loss. I'm losing about a pound every 1 to 2 weeks. Below is what I try to stick to. (Really hard to do if we don't make the meals ahead of time--we like to cook but have a lot of other things get in the way, like yardwork, so we make a lot of food at one time in the crockpot. This, we either package in single-serving containers or in larger containers but mark it with how many servings are in the container, so we know about how big a helping to get.) This plan for myself is based loosely on the Fertility Diet, the DASH Diet, and a calorie count of around 1400 per day (but I don't get caught up in counting my calories or anything else, other than what I note below). That may or may not work for you, depending on your personal nutritional needs. Whatever plan you come up with, it is best to talk it over with your doctor or dietitian. (And remember the appropriate serving sizes of each type of food.)
• Carbohydrates: 5 servings (I try to make sure that no more than one of these a day is potato or a processed carb like white rice or flour)
• Fruits: 3 servings (this includes fruit juices)
• Vegetables: 5 servings (MINIMUM--doesn't include corn or peas. I count corn as a carb and peas as either a carb or a legume, depending on the day)
• Dairy: 2 servings (1 whole-fat, 1 low- or no-fat)
• Protein: 4 servings (no more than 1 of red meat; the other three can be egg, poultry, fish, nuts, or legume--I try to make it one of egg/poultry/fish and two of nuts/legumes)
• Fats: 2 (because I'm limiting these, I don't pay too much attention to whether they're "good" or "bad," but I try to make them good. Fats include avocado, olive oil, vegetable oil, butter, mayonnaise, bacon (counts as a meat AND a fat, it's so good), salad dressing (I don't waste my time with reduced-fat or low-fat because they are usually so full of sugar or salt or high fructose corn syrup that they're far worse for you than the fat, plus they usually taste like crap. The full-fat ones usually take less to give more flavor and are more satisfying, anyway.), and probably some others I'm missing.
I try to drink at least 96 ounces of fluids (tea, coffee, or water) a day, though I've been failing miserably lately. Try to stay away from sodas as much as possible, even the diet ones. They're really hard for your body to process, plus there's the issue of the artificial sweeteners that I noted above. Drink one every now and then, though, it's no harm, if you like them.
Another cost-saving measure we take is to shop at Sam's about once every 1 or 2 months. Buying in bulk is helpful if you have the means to do it occasionally and if you have the storage for it. We stock up on things that we always use tons of, like tomato paste, tomato sauce, canned peas, canned corn, some frozen fruits and veggies. But this is feasible for us because we have a huge freezer in our garage, a small chest freezer in our dining room, a TON of cabinet space in our kitchen (so much that even though we've lived here almost two years, there are some drawers and cabinets still not used), a basement full of shelves, and a wholesale club not very far away.
All our storage space makes it easy to stock up on canned and frozen goods, and so we can preserve and store what we grow in our garden. My husband has become a gardening fanatic, and though a lot of our food goes to waste, we're getting better at growing a lot of it (learning our soil and air conditions) with as little effort as possible (in the hopes of him getting a job soon and me being busy with work) and preserving it (doing it right away instead of putting it off like we're inclined to do).
My weight has always caused me some mental problems--at times more than others, definitely. I think it helped me that my family (my dad's whole family) are all kind of big, and that my dad is so large and yet so healthy. And I have such supportive family and friends, so my self-confidence was always high, and I was able to separate MY identity from my weight. Of course sometimes I think that was bad because it didn't give me enough reason to really try harder to lose weight. But losing weight is really, really fucking hard. Hey, I was in tons of pain and lost 23 pounds over two weeks. It was an almost-magical weight-loss diet! *snort* But in spite of my weight and the occasional taunting and teasing, I had to remind myself that the weight is important to me and my family only insofar as it affects my health. Regarding what other people think, you have to remind yourself that it just doesn't matter. People will judge. You can't help that. The only thing you can guarantee in life is how YOU act. (I have to remind myself and my husband of that a lot...it applies to everything in life.) But if others judge you, it doesn't matter. It can hurt, sure, but only as much as you "let" it--otherwise, their judgments and opinions don't matter one damn bit, they don't affect you at all. Just remember that. And remember that your worth lies somewhere else, not on the surface. (In other words, "Screw them.") If you feel confident and worthwhile, you will appear confident and worthwhile, no matter your size.
I know, it's all a ton easier said than done, but I've been working on DOING that most of my adolescent and adult life. You can do it. And if the people you know and call your friends hurt your efforts in that matter, consider whether they are truly your friends.
I definitely know the problems with changing your diet when you're poor. Based on income alone, we're not poor, but we have a lot of debt from my youthful spending days and other consequences of life, so the only income we can really "play with" is our grocery allotment each week. The absolute MAIN thing in food budgeting is MEAL PLANNING. We plan our meals and create our grocery list at the same time. When we don't stick to the meal plan is when we have problems feeling full and staying full and wasting food. (It takes a lot of practice, knowing what to make, how much of it to make, to make sure you're getting all your nutrition without eating too much or buying so much food that it goes to waste. It took a few weeks to get it hammered out, to know what would work well for us and what wouldn't.)
The first key thing, if you can manage it, is to try to avoid processed foods. Normally, people say this and mean that you should get only fresh foods, not prepackaged foods, but that's not always practical, given how fast "fresh" food can go bad and how expensive it can be if it's out of season. So you can get packaged foods--frozen fruits and vegetables are perfect, because they are often picked at the height of freshness and flash frozen, so they often have better nutrition than the "fresh" stuff you can buy, which is often picked early and then loses nutrition the longer it sits around. But if you buy the frozen stuff, try as much as POSSIBLE to get the frozen ones that have nothing added--no sugar, no salt (often, this is the store brand, but still check the ingredients), no high fructose corn syrup, nothing. (Kroger has great cost and variety in their frozen vegetables, and they often run 10 for $10 sales. Compared to Target, Walmart, they have the best selection and cost…at least in our experience.)
Canned fruit and vegetables are next best for F&V. They're a little worse because they almost always have to have additional things added for preservation, but you can be careful. For fruits, try to get fruits that are in their own juices, not with sugar or high fructose corn syrup (or even artificial sweeteners) added. (There's evidence that the body, when you're trying to lose weight, treats artificial sweeteners the same as sugar, and that they can even be worse than sugar, causing other cravings that sugar wouldn't cause.) For canned veggies, try to get ones that have no salt added. Sure, these often suck in flavor if you eat them as they are, but add salt on your own. Table salt is different in flavor at this stage than the sodium and salt they add for preserving, and a little of it goes a long way, so it takes a lot less of the stuff you add to give flavor than the stuff they add for preserving. (When you buy salt, try getting sea salt--I think Morton now sells it for the same price as "traditional" salt. It's a little bit stronger in flavor than the other salt, so again, you have to use less of it for flavor.) And the less sodium you're taking in, the less water you're retaining, which means you're putting less pressure on your circulatory system (and the less weight you have--water weighs a LOT!).
Fruit juice is a good way to get fruit in a pinch and for variety and for long-term storage/keeping, but it's not so great because you don't get the fiber, which helps the feeling of fullness. Plus, you have to be careful of a couple of things--get only 100% juice, try to avoid from concentrate, as they nearly always add sweeteners of some sort. Juicy Juice is usually the cheapest but very sweet (they use super-sweet juices to add sweetness).
For health and/or weight loss--try to eat whole grains instead of processed flours. This means TRY to eat breads and pastas that are made with whole grains (or whole grain flour, if you can't afford the whole grain breads). If you can't do that, try to eat breads that don't have high fructose corn syrup or partially hydrogenated oil (that tip’s for health AND fertility). [To offset the costs (and to get used to the flavors), we sometimes bought one package of normal, cheap-ass pasta, and another package of whole-grain or spinach pasta, for example.] Try to eat brown rice or wild rice instead of cheap-ass white rice. I know both of these suggestions have cost elements involved, but eating whole grains (bread and rice) means you're eating more fiber, which helps you feel full much longer, which means you're eating less, which is good for your weight and for your bank account. [Because we're both at home, we make our own bread with whole-grain flour--the bag of flour seems very expensive, but when we do the math, it works out to costing about 30 cents for a loaf of bread, and the bag makes 10 or more loaves of bread. We found a book that makes making bread EXTREMELY easy, with very little work, no days and days of letting it rise, etc...Starting mixing everything to final baking takes about 4 hours (only about 20 minutes are actual work time). And we have bread for about a week.]
Other whole grains include steel-cut oats (Irish oatmeal) instead of rolled oats. Yup, they're expensive, but again, they take much less to make you feel full, you feel full longer, and there's less of an impact on your insulin levels, not nearly as much spiking.
Make sure you're eating GOOD fats, a handful or two of nuts, some olive oil, etc., as much as possible instead of butter or grease. Fats are good for you--they also help you feel full, especially if combined with whole grains. (If you don't eat a lot of dairy products but drink milk, get whole milk instead of lower-fat. The whole milk has fewer additives (including hormones, which affect women’s bodies especially, especially when it comes to fertility, more than the men's) and helps you feel full longer. If you eat dairy products, don't make them all low- or no-fat...for the same reason.)
Here's a really good point for eating cheaply and for your health: Try to cut back on your animal proteins and instead get your proteins by eating legumes (beans, lentils, peas, peanuts) or nuts paired with whole grains. Beans (legume) and cornbread (grain) give you a perfect protein at a lot lower fat and calorie intake than a slab of meat. (Peanut butter on whole-grain bread is good, but watch out for too much peanut butter, as it is high in fat. It’s “good” fat for the needs of your body, but too much fat is still too much fat for weight loss.) Plus, you'll feel full longer because of the fiber. We have a freezer full of beef and chicken and pork that my parents give us for Christmas and birthdays and such, and it takes us a year or more to go through it all because we try to eat meat only once a day or less...it just has so many calories yet doesn't keep you as full, plus it can seriously affect your hormone levels (women MUCH more than men), which affect and are affected by INSULIN and can affect your fertility. Dried beans take a long time to cook, obviously. We buy dried beans and lentils by the cartful [that aisle, with the dried rice, is the single one we get most of our food from, aside from produce when fresh stuff is in season]. Our crockpot is the most-used appliance in our house after my laptop, which is what I do my work on.
This is all stuff we've picked up from a variety of diets over the past few years, but much of the information is covered in the book The Fertility Diet. I tried to offer a short version here...we'll call it condensed rather than short, though... :)
I know it can be hard to find some of these things in some places, particularly in small towns, but we’ve discovered that sometimes the unlikeliest of places carry great food at decent prices. In this town, Walmart often has better-quality produce than Kroger…if it’s in season. If it’s out of season, our Kroger stores usually have higher-quality fresh produce, though it costs more. In other places we’ve lived, however, we’ve had to steer clear of anything fresh at Kroger. Really, it all depends on where you live. Become familiar with all the stores in your area, don’t get complacent and think that one is always the best.
We have at least 5 crockpot cookbooks and the bread cookbook I mentioned. They help a lot. When I bought these cookbooks (on Half.com, but I used the preview feature on Amazon.com to see the tables of contents), I tried to get ones that called for foods we would be likely to have around, so we don't have to buy a lot of special foods. I’m glad to share recipes, book titles, or any other tips. And I'll be happy to answer any questions. I know I have provided a lot of information here.
What I'm trying to do is follow an eating habit that will help me eat well for fertility and for weight loss. I'm losing about a pound every 1 to 2 weeks. Below is what I try to stick to. (Really hard to do if we don't make the meals ahead of time--we like to cook but have a lot of other things get in the way, like yardwork, so we make a lot of food at one time in the crockpot. This, we either package in single-serving containers or in larger containers but mark it with how many servings are in the container, so we know about how big a helping to get.) This plan for myself is based loosely on the Fertility Diet, the DASH Diet, and a calorie count of around 1400 per day (but I don't get caught up in counting my calories or anything else, other than what I note below). That may or may not work for you, depending on your personal nutritional needs. Whatever plan you come up with, it is best to talk it over with your doctor or dietitian. (And remember the appropriate serving sizes of each type of food.)
• Carbohydrates: 5 servings (I try to make sure that no more than one of these a day is potato or a processed carb like white rice or flour)
• Fruits: 3 servings (this includes fruit juices)
• Vegetables: 5 servings (MINIMUM--doesn't include corn or peas. I count corn as a carb and peas as either a carb or a legume, depending on the day)
• Dairy: 2 servings (1 whole-fat, 1 low- or no-fat)
• Protein: 4 servings (no more than 1 of red meat; the other three can be egg, poultry, fish, nuts, or legume--I try to make it one of egg/poultry/fish and two of nuts/legumes)
• Fats: 2 (because I'm limiting these, I don't pay too much attention to whether they're "good" or "bad," but I try to make them good. Fats include avocado, olive oil, vegetable oil, butter, mayonnaise, bacon (counts as a meat AND a fat, it's so good), salad dressing (I don't waste my time with reduced-fat or low-fat because they are usually so full of sugar or salt or high fructose corn syrup that they're far worse for you than the fat, plus they usually taste like crap. The full-fat ones usually take less to give more flavor and are more satisfying, anyway.), and probably some others I'm missing.
I try to drink at least 96 ounces of fluids (tea, coffee, or water) a day, though I've been failing miserably lately. Try to stay away from sodas as much as possible, even the diet ones. They're really hard for your body to process, plus there's the issue of the artificial sweeteners that I noted above. Drink one every now and then, though, it's no harm, if you like them.
Another cost-saving measure we take is to shop at Sam's about once every 1 or 2 months. Buying in bulk is helpful if you have the means to do it occasionally and if you have the storage for it. We stock up on things that we always use tons of, like tomato paste, tomato sauce, canned peas, canned corn, some frozen fruits and veggies. But this is feasible for us because we have a huge freezer in our garage, a small chest freezer in our dining room, a TON of cabinet space in our kitchen (so much that even though we've lived here almost two years, there are some drawers and cabinets still not used), a basement full of shelves, and a wholesale club not very far away.
All our storage space makes it easy to stock up on canned and frozen goods, and so we can preserve and store what we grow in our garden. My husband has become a gardening fanatic, and though a lot of our food goes to waste, we're getting better at growing a lot of it (learning our soil and air conditions) with as little effort as possible (in the hopes of him getting a job soon and me being busy with work) and preserving it (doing it right away instead of putting it off like we're inclined to do).
Wednesday, February 17, 2010
There Might Be Hope for Me Yet
Yesterday, I stumbled across a Website (http://www.abledata.com) that talks about assistive products. There was a government organization that ran clinics for creating and distributing low-vision aids from the late 1960s to the late 1980s but no longer exists, but they made available all their publication and information so people can benefit from their knowledge. (http://www.abledata.com/abledata_docs/Peripheral_Vision.htm) Apparently, there are special “field-expanding” glasses developed for people with reduced peripheral vision, even as severe as tunnel vision. The assistive devices don’t restore normal vision, obviously, but can help in day-to-day functioning, even, in some cases (depending on the severity of the condition and on state regulations) driving!!!!
Of course, one of the worst problems I’ve had in coping with my eye damage is not being able to drive. I go in April to have my vision tested again, and I’m going to have my peripheral vision tested to see if it is sufficient as-is for driving, at least in some situations. But in case it’s not, I want to find out more about these devices. I’ve posted information and questions to the two online support groups I’m a part of to see if any of the IIH “old hands” have used any of these devices. I have to do more research and reading on this subject, but I’ve just been so excited by skimming this website that I can’t really take it in! I even had Mike look it over (without telling him anything about the website), just to make sure I wasn’t seeing what I wanted to see (that there may be a device to help me drive again!). He came to the same conclusion I had. Woohoo! I mean, before I stumbled across this website yesterday, I had been mulling over such assistive devices, thinking about my friends with spina bifida and my friend paralyzed from the waist down who use assistive devices to drive and thinking that it would stand to reason for there to be such things for people with vision issues. But then, I thought, no, it really wouldn’t make sense because those friends, although they have a hard time steering with their arms and hands, can at least SEE the road and the things around them without difficulty. But someone once upon a time DID consider us poor unfortunate souls. (I’m taking a moment now to sing and dance in my head at this joyous coming-together of older knowledge and newer knowledge!)
Also, someone on one of the support groups today or yesterday posed an interesting question about hormones and IIH. Specifically, she wondered if anyone had had their hormones tested. Apparently, talk of hormones and IIH symptoms comes up a lot in the forums, but the doctors just keep pushing weight loss. The problem is that there are so many people with IIH who lose weight and still have symptoms, and there are even people who have never been overweight but have IIH, so she’s going to actually have her hormones tested. A couple of us expressed a deep interest to keep posted. I mentioned that I have tracked my symptoms on a calendar and have found that the past two or three times when my vision seems to have gotten grainier and a little more limited, it happens when I believe I might be ovulating. This is difficult for me to ascertain, of course, because I have only had three cycles since all of this happened and I’ve not generally been regular, but if this cycle begins on Day 28 or 29, it would hold pretty well with my theory. Anyway, when I mentioned this online as a reason for her to go for it and keep us posted (because I can’t afford to go to the doctor all the time with no insurance), someone else said she has the exact problem with her vision and pain spikes WHEN SHE OVULATES. (And she’s never weighed more than 150 when pregnant.) It’s so good to know I’m not alone… And that my observations are actually showing me something worthwhile. (Also, this second woman had thought of mentioning the hormone link to her doctors at Johns Hopkins, but now that I’ve mentioned my issue, she DEFINITELY is going to bring it up at her visit this spring.)
Well, I may not be able to do much on my own, but I’m planting seeds and encouraging others, and maybe we really can get somewhere in knowledge about this condition. (No, of course I don’t think I’m the key to pulling together all this information, but if we’re all working together and I can be a fresh supportive voice, all the better.)
* Stringham high: Received two shipments of seeds and gardening supplies today!
* Stringham low: Still surrounded by snow!
* Stringham super-high: Stephanie might be able to drive sometime this year!
Of course, one of the worst problems I’ve had in coping with my eye damage is not being able to drive. I go in April to have my vision tested again, and I’m going to have my peripheral vision tested to see if it is sufficient as-is for driving, at least in some situations. But in case it’s not, I want to find out more about these devices. I’ve posted information and questions to the two online support groups I’m a part of to see if any of the IIH “old hands” have used any of these devices. I have to do more research and reading on this subject, but I’ve just been so excited by skimming this website that I can’t really take it in! I even had Mike look it over (without telling him anything about the website), just to make sure I wasn’t seeing what I wanted to see (that there may be a device to help me drive again!). He came to the same conclusion I had. Woohoo! I mean, before I stumbled across this website yesterday, I had been mulling over such assistive devices, thinking about my friends with spina bifida and my friend paralyzed from the waist down who use assistive devices to drive and thinking that it would stand to reason for there to be such things for people with vision issues. But then, I thought, no, it really wouldn’t make sense because those friends, although they have a hard time steering with their arms and hands, can at least SEE the road and the things around them without difficulty. But someone once upon a time DID consider us poor unfortunate souls. (I’m taking a moment now to sing and dance in my head at this joyous coming-together of older knowledge and newer knowledge!)
Also, someone on one of the support groups today or yesterday posed an interesting question about hormones and IIH. Specifically, she wondered if anyone had had their hormones tested. Apparently, talk of hormones and IIH symptoms comes up a lot in the forums, but the doctors just keep pushing weight loss. The problem is that there are so many people with IIH who lose weight and still have symptoms, and there are even people who have never been overweight but have IIH, so she’s going to actually have her hormones tested. A couple of us expressed a deep interest to keep posted. I mentioned that I have tracked my symptoms on a calendar and have found that the past two or three times when my vision seems to have gotten grainier and a little more limited, it happens when I believe I might be ovulating. This is difficult for me to ascertain, of course, because I have only had three cycles since all of this happened and I’ve not generally been regular, but if this cycle begins on Day 28 or 29, it would hold pretty well with my theory. Anyway, when I mentioned this online as a reason for her to go for it and keep us posted (because I can’t afford to go to the doctor all the time with no insurance), someone else said she has the exact problem with her vision and pain spikes WHEN SHE OVULATES. (And she’s never weighed more than 150 when pregnant.) It’s so good to know I’m not alone… And that my observations are actually showing me something worthwhile. (Also, this second woman had thought of mentioning the hormone link to her doctors at Johns Hopkins, but now that I’ve mentioned my issue, she DEFINITELY is going to bring it up at her visit this spring.)
Well, I may not be able to do much on my own, but I’m planting seeds and encouraging others, and maybe we really can get somewhere in knowledge about this condition. (No, of course I don’t think I’m the key to pulling together all this information, but if we’re all working together and I can be a fresh supportive voice, all the better.)
* Stringham high: Received two shipments of seeds and gardening supplies today!
* Stringham low: Still surrounded by snow!
* Stringham super-high: Stephanie might be able to drive sometime this year!
Thursday, January 28, 2010
Readers and Critiquers Wanted
As some of you (all of you?) know, I decided back in November to write a book about my experiences with the miscarriage, the hospitalization, the IIH, vision loss and recovery, etc. I have spurts of working on it, and today was one of those big working days. I wrote an entire chapter. It's a very rough draft, but I feel it needs to be reviewed and revised. Much of the other stuff I've written is still a little too raw emotionally for me to polish up enough to share, but this one needs reviewers. The organization probably needs some work, and I'd like some honest comments and criticism about the writing. I'm looking for volunteers. I know some of it may not make a lot of sense out of context, and it's definitely a middle chapter, but it should still stand alone pretty well.
Please email me if you would be interested in reading it or if you know of someone who might be interested in reading it.
Please email me if you would be interested in reading it or if you know of someone who might be interested in reading it.
Wednesday, January 20, 2010
Three Doctors a Day Keeps Nothing away
Nothing really exciting today, just a long update on "my condition." As some of you know, I felt great in the first two weeks of the month and stopped taking my iron supplements for my anemia and started exercising. Then I started feeling crummier and crummier last week. I was in pain (had to take vicodin for the first time since way back in October) and my vision was messed up and I was crying constantly, at the drop of a hat, worried about anything and everything.
I've been doing research online (always a double-edged sword) and joined an online support group for people with my condition (known by various names, including benign intracranial hypertension [BIH], pseudotumor cerebri [PTC], or idiopathic intracranial hypertension [IIH]). The time was particularly challenging emotionally because the greatest of the pain hit me on the weekend, when, of course, I knew it would be pointless to call my docs. So, some of you got to read lovely emotional emails from me, and some of you got to hear me nearly bawl on the phone, and some of you were spared it all together. Below is the medical summary of today, a very exhausting day. (By the way, you are included in the "contacts" I mention below. If you have any ideas or suggestions, as always, as in the summer, I'd love to hear them, and I thank you all for all that you do to make this world a better place for me and others.):
Well, today was a mixed bag of information. I still hadn’t heard from Dr. Hilburn (the neurologist) or his acting nurse about my concerns, even though I called early Monday morning, so I called this morning before 9 and left another message for her, asking for a call.
Then we were off to Indianapolis for my visit with Dr. Rieser, who hadn’t been kept updated on any of the recent activity in my life. So my visit with him was me bringing him up to speed on our conception and everything since then. He said he has “a couple” other patients with IIH, so he knows something of the disease, but he’s not up to date on everything about it. He thinks it’s great I’m doing my research and staying informed. He thinks the iron-deficiency anemia could be related, but he’s not sure about causality with the recent headaches. He said the iron count of 13 (what Mike remembers my iron count being last time it was taken at St. Vincent’s in October) is good and that he doesn’t think me taking supplements will make me overdose and produce too much, but it is possible that I was a little low when I started getting the headache flare-ups not long after my period AND starting the exercise again. He thinks the exercise may be the culprit. He suggested a book (Eating for Life) to me by an exercise physiologist, saying he’s had several patients (with IIH?) have good luck with it, losing weight this way. He suggests I “bag the exercise for now,” particularly the strenuous stuff, and try to lose weight through controlling food alone right now. Then maybe I can add exercise in later.
My overall impression is that, as always, Dr. Rieser is great. He said several times that I am really the best person to know what’s unusual for me and what’s not and to tell them (the doctor’s) what I think is going on. Of course, it’s their job to interpret, but he DOES listen AND consider, rather than just tossing everything out. He tells me WHY he thinks an idea doesn’t hold up or why it does, for that matter. So, maybe I’ll keep him as my primary care physician, after all, even though he is so far away.
I really don’t like the idea of not exercising. I think the exercising is what was really helping me lose weight, but I could be wrong. I do respect Dr. Rieser and his opinions, so I’ll give it a shot, after all. He said that he thought with the exercise, I was “setting myself up for a big fat failure,” in exercising, then having pain and not exercising because of the pain, etc. , even though weight is often an issue with the patients with IIH and they need to lose weight. That’s why he recommends this way of eating to most of them. He also asked what the other docs had said about conceiving and asked if I knew about the dangers of the other drugs I’m on in pregnancy. I said yes and explained that Dr. Hilburn had said that conception was okay and that, of course, the biggest concern would be for my health. And I told Dr. Rieser that I, of course, am scared of getting pregnant, primarily for my vision, though I do still want to have a baby. I teared up, and looked down and started writing, so Dr. Rieser filled in the gap by answering that he did think it was a good idea to wait 9 months to a year to get this IIH stabilized before we started thinking about conceiving. According to him, we’re “still young and healthy,” so that’s not a concern. I told him about my quest to find out more about women who’ve had pregnancies with IIH, especially after having the vision issues I’ve had, and he again said he thinks it’s great I’m keeping up on everything and that I can call anytime I have questions; if he can help, he will.
The visit with Dr. Lee was a little more mixed. There is no fluid on my optic nerves, so any vision issues I’ve had are not cause for more concern YET. My vision in my left eye is still 20/20, in my right eye, still 20/40. On this visit, I was given a color test, which I haven’t been given before. I got to try to pick out numbers formed from clusters of circles of various shades of one or two colors set against circles of other colors. I got 5/14 on my right eye and 14/14 in my left, although that was still a challenge. He says there is some pallor in my right optic disc, which we knew. That’s leftover from the optic nerve basically being oxygen deprived when the pressure cut off so much of the circulation to my eyes. That’s the eye, of course, that has far more problems than the other, visually.
Dr. Lee is concerned that my neurologist has said he doesn’t need to see me any longer unless I feel I need to be seen. He (Dr. Lee) thinks the neurologist should see me at least twice a year, to keep an eye on my progress, because the optic nerve sheath fenestration has “not great permanent results,” so we really have to keep an eye on my condition. He said he would far rather see me come in 10 times a month out of paranoia than not come in that one time that it really mattered. It’s funny, at first, Dr. Lee seemed really hard to get information out of, a little brusque, but now he seems to open up more and more every time we see him.
I had heard and read, of course, about ONSF “failing” but had not managed to find information, so we asked him about the rate, and he said that he would estimate it at greater than 50%. He said it’s basically a band-aid. Really, the point is to try to control pressure with medicines, weight loss, maybe even shunting (though that has its own failure rates in some patients), and that’s why the condition needs to be monitored, especially the cranial pressure. Anyway, when the ONSF “fails,” what happens is that the hole “plugs” back up when the pressure in the head goes back down, and then, if the pressure rises again, the hole has resealed with scar tissue and so there is no longer anywhere for the pressure to vent again, so you therefore have the need for a repeated procedure or for shunts.
Of course, I’ve been kicking around the idea for a while that Dr. Hilburn is a nice guy but just doesn’t seem to know much about IIH and isn’t the best doctor to manage my care for this, so when Dr. Lee again expressed his concern about this lack of observation, I asked Dr. Lee if, based on his experience of doing ONSF procedures, he knew of any neurologists he could refer me to. He said absolutely. I said of course, the problem is that I’m self-pay. Well, that made things a lot more difficult. Because we don’t live in Marion County, we can’t go to Wishart, which is always the first response. So he’s down to ONE person he can refer me to. One. She has a private practice but volunteers some of her time at IU Med School. He thinks she might be able to take me on there, but it might be a long wait before she can get me in. He dictated a letter to her while we were there, asking her if she could take us on, and then told me to give her a call in a week or two. This doctor is a neuro-ophthalmologist, so she can monitor both the IIH and the vision issues. That’s fantastic. When he mentioned that, it reminded me of information I’d found a few days ago about a neuro-opthalmologist up in Lafayette, Scott Sanders. He’s heard of Dr. Sanders, but only by name. He doesn’t know about his reputation at all. Neither do I, unfortunately…I can’t find anything on the man’s reputation.
Dr. Lee is concerned that, of course, we will have a harder time finding quality care for me because I am a self-pay patient, as we see with the immediate reduction in the number of specialists willing to see me). He told us that he recommend I get health insurance. (Gee, thanks, Doc, we hadn’t already thought of that!) It’s a very expensive disorder I have, and it’s going to cost a lot to monitor. He suggested Medicaid; I make too much money, I explained. He said apply, reapply, and reapply again. (I will, but I don’t think it will do any good.) He suggested getting individual insurance; I already tried and weighed too much, and now I have a preexisting condition, I explained. Mike said basically, our only hope is for him to get a job that would provide insurance to me despite my preexisting condition. Dr. Lee said something like, “There ya go,” or “Do what you have to,” and I responded that Mike has been unemployed and looking for a job for nearly a year now, it’s not so easy.
One last thing, Dr. Lee said, we might consider, is disability. We MIGHT be able to get it for blindness based on my visual field limitation in my right eye. But, he said, if I ever want to drive, I couldn’t do it, because to get disability based on blindness assumes permanent blindness so I would never be able to get a driver’s license, and if I ever tried to reapply for one, the government would come looking at my history and why I was suddenly “not blind” anymore. I also pointed out that if I’m getting disability payments, I can’t earn much money. He said it might be worth it to “be healthy.” I replied that it wouldn’t be worth it if we couldn’t afford to pay for food, clothing, or shelter, so our overall health would suffer. (Besides, I’m not so sure that a lot of people on disability have access to better care than I would, just because they have more options available.) Mike and I are still pretty sure that, despite the high cost of everything, given all our options, we’re still better off with me working as much as possible and remaining uninsured (though TRYING to find insurance) and paying for things out of pocket, making payments as/if necessary than any of the other options so far presented.
I’m still researching, using my contacts, the support group, every connection I can think of. I’m crossing my fingers. Dr. Lee even went so far as to suggest that perhaps everything I experienced was just a perfect storm with the hormone fluctuations from the miscarriage, my weight, etc., and that maybe now my body is back in its normal place and isn’t making excess CSF any longer and it’s the diamox and topomax giving me the headaches. I’m not sure I’d go that far yet, though it’s a nice thought.
And finally, on our way home from all of this, I heard back from the neurologist’s acting nurse. She said she had been waiting for a response from him to her email. He said:
-He is not aware of Topomax causing depression or anxiety but knows that anticonvulsants (which Topomax is) in general can cause them. (The information about depression and anxiety in relation to topomax was a brand-new insert with my topomax prescription starting in December, so it stands to reason that he wouldn’t necessarily know about it yet.)
-He doesn’t think stopping the iron supplement would cause the headaches but that the depressed and anxious feelings could.
-I was on the topomax to control the IIH headaches, but I may not need that anymore.
-He wants me to cut the topomax dose by half (either cut the pill in half at morning and evening OR take only 1 dose per day), and if that doesn’t help the anxious and depressed feelings after 4 days and I’m still concerned, I should call back, and we can try another medication.
So, of course, it is entirely possibly that it is my condition, and not the medicine, causing the depressed and anxious feelings, but I’d like to see how this goes. Perhaps I’ll notice a difference in some way, either in pain (increased or decreased) or in anxious feelings.
So, now we’re back with a clean slate. Tonight, I’ll take my medicines as I’ve been taking them. I’ll probably eliminate tomorrow night’s topomax dose. I’ll stop doing strenuous exercise, and just walk or use the lighter exercises on the WiiFit (rather than the more strenuous EA Sport Active exercises that I was doing). That way, I’m back to where I was at the beginning of the month, when I was feeling so good and better, and the only change with be the topomax. (I sure don’t like being on the verge of tears all the time. I can be perfectly fine one second, then one little thought or word can just make me nearly break down, and that drives me nuts. I hate not being able to hold myself together a little better than that. I’d sure like to find out that’s caused by a medication rather than this condition, because that’s probably the thing that’s making it hardest for me to cope with everything right now, I think....I feel like my coping abilities are just derailed.)
I've been doing research online (always a double-edged sword) and joined an online support group for people with my condition (known by various names, including benign intracranial hypertension [BIH], pseudotumor cerebri [PTC], or idiopathic intracranial hypertension [IIH]). The time was particularly challenging emotionally because the greatest of the pain hit me on the weekend, when, of course, I knew it would be pointless to call my docs. So, some of you got to read lovely emotional emails from me, and some of you got to hear me nearly bawl on the phone, and some of you were spared it all together. Below is the medical summary of today, a very exhausting day. (By the way, you are included in the "contacts" I mention below. If you have any ideas or suggestions, as always, as in the summer, I'd love to hear them, and I thank you all for all that you do to make this world a better place for me and others.):
Well, today was a mixed bag of information. I still hadn’t heard from Dr. Hilburn (the neurologist) or his acting nurse about my concerns, even though I called early Monday morning, so I called this morning before 9 and left another message for her, asking for a call.
Then we were off to Indianapolis for my visit with Dr. Rieser, who hadn’t been kept updated on any of the recent activity in my life. So my visit with him was me bringing him up to speed on our conception and everything since then. He said he has “a couple” other patients with IIH, so he knows something of the disease, but he’s not up to date on everything about it. He thinks it’s great I’m doing my research and staying informed. He thinks the iron-deficiency anemia could be related, but he’s not sure about causality with the recent headaches. He said the iron count of 13 (what Mike remembers my iron count being last time it was taken at St. Vincent’s in October) is good and that he doesn’t think me taking supplements will make me overdose and produce too much, but it is possible that I was a little low when I started getting the headache flare-ups not long after my period AND starting the exercise again. He thinks the exercise may be the culprit. He suggested a book (Eating for Life) to me by an exercise physiologist, saying he’s had several patients (with IIH?) have good luck with it, losing weight this way. He suggests I “bag the exercise for now,” particularly the strenuous stuff, and try to lose weight through controlling food alone right now. Then maybe I can add exercise in later.
My overall impression is that, as always, Dr. Rieser is great. He said several times that I am really the best person to know what’s unusual for me and what’s not and to tell them (the doctor’s) what I think is going on. Of course, it’s their job to interpret, but he DOES listen AND consider, rather than just tossing everything out. He tells me WHY he thinks an idea doesn’t hold up or why it does, for that matter. So, maybe I’ll keep him as my primary care physician, after all, even though he is so far away.
I really don’t like the idea of not exercising. I think the exercising is what was really helping me lose weight, but I could be wrong. I do respect Dr. Rieser and his opinions, so I’ll give it a shot, after all. He said that he thought with the exercise, I was “setting myself up for a big fat failure,” in exercising, then having pain and not exercising because of the pain, etc. , even though weight is often an issue with the patients with IIH and they need to lose weight. That’s why he recommends this way of eating to most of them. He also asked what the other docs had said about conceiving and asked if I knew about the dangers of the other drugs I’m on in pregnancy. I said yes and explained that Dr. Hilburn had said that conception was okay and that, of course, the biggest concern would be for my health. And I told Dr. Rieser that I, of course, am scared of getting pregnant, primarily for my vision, though I do still want to have a baby. I teared up, and looked down and started writing, so Dr. Rieser filled in the gap by answering that he did think it was a good idea to wait 9 months to a year to get this IIH stabilized before we started thinking about conceiving. According to him, we’re “still young and healthy,” so that’s not a concern. I told him about my quest to find out more about women who’ve had pregnancies with IIH, especially after having the vision issues I’ve had, and he again said he thinks it’s great I’m keeping up on everything and that I can call anytime I have questions; if he can help, he will.
The visit with Dr. Lee was a little more mixed. There is no fluid on my optic nerves, so any vision issues I’ve had are not cause for more concern YET. My vision in my left eye is still 20/20, in my right eye, still 20/40. On this visit, I was given a color test, which I haven’t been given before. I got to try to pick out numbers formed from clusters of circles of various shades of one or two colors set against circles of other colors. I got 5/14 on my right eye and 14/14 in my left, although that was still a challenge. He says there is some pallor in my right optic disc, which we knew. That’s leftover from the optic nerve basically being oxygen deprived when the pressure cut off so much of the circulation to my eyes. That’s the eye, of course, that has far more problems than the other, visually.
Dr. Lee is concerned that my neurologist has said he doesn’t need to see me any longer unless I feel I need to be seen. He (Dr. Lee) thinks the neurologist should see me at least twice a year, to keep an eye on my progress, because the optic nerve sheath fenestration has “not great permanent results,” so we really have to keep an eye on my condition. He said he would far rather see me come in 10 times a month out of paranoia than not come in that one time that it really mattered. It’s funny, at first, Dr. Lee seemed really hard to get information out of, a little brusque, but now he seems to open up more and more every time we see him.
I had heard and read, of course, about ONSF “failing” but had not managed to find information, so we asked him about the rate, and he said that he would estimate it at greater than 50%. He said it’s basically a band-aid. Really, the point is to try to control pressure with medicines, weight loss, maybe even shunting (though that has its own failure rates in some patients), and that’s why the condition needs to be monitored, especially the cranial pressure. Anyway, when the ONSF “fails,” what happens is that the hole “plugs” back up when the pressure in the head goes back down, and then, if the pressure rises again, the hole has resealed with scar tissue and so there is no longer anywhere for the pressure to vent again, so you therefore have the need for a repeated procedure or for shunts.
Of course, I’ve been kicking around the idea for a while that Dr. Hilburn is a nice guy but just doesn’t seem to know much about IIH and isn’t the best doctor to manage my care for this, so when Dr. Lee again expressed his concern about this lack of observation, I asked Dr. Lee if, based on his experience of doing ONSF procedures, he knew of any neurologists he could refer me to. He said absolutely. I said of course, the problem is that I’m self-pay. Well, that made things a lot more difficult. Because we don’t live in Marion County, we can’t go to Wishart, which is always the first response. So he’s down to ONE person he can refer me to. One. She has a private practice but volunteers some of her time at IU Med School. He thinks she might be able to take me on there, but it might be a long wait before she can get me in. He dictated a letter to her while we were there, asking her if she could take us on, and then told me to give her a call in a week or two. This doctor is a neuro-ophthalmologist, so she can monitor both the IIH and the vision issues. That’s fantastic. When he mentioned that, it reminded me of information I’d found a few days ago about a neuro-opthalmologist up in Lafayette, Scott Sanders. He’s heard of Dr. Sanders, but only by name. He doesn’t know about his reputation at all. Neither do I, unfortunately…I can’t find anything on the man’s reputation.
Dr. Lee is concerned that, of course, we will have a harder time finding quality care for me because I am a self-pay patient, as we see with the immediate reduction in the number of specialists willing to see me). He told us that he recommend I get health insurance. (Gee, thanks, Doc, we hadn’t already thought of that!) It’s a very expensive disorder I have, and it’s going to cost a lot to monitor. He suggested Medicaid; I make too much money, I explained. He said apply, reapply, and reapply again. (I will, but I don’t think it will do any good.) He suggested getting individual insurance; I already tried and weighed too much, and now I have a preexisting condition, I explained. Mike said basically, our only hope is for him to get a job that would provide insurance to me despite my preexisting condition. Dr. Lee said something like, “There ya go,” or “Do what you have to,” and I responded that Mike has been unemployed and looking for a job for nearly a year now, it’s not so easy.
One last thing, Dr. Lee said, we might consider, is disability. We MIGHT be able to get it for blindness based on my visual field limitation in my right eye. But, he said, if I ever want to drive, I couldn’t do it, because to get disability based on blindness assumes permanent blindness so I would never be able to get a driver’s license, and if I ever tried to reapply for one, the government would come looking at my history and why I was suddenly “not blind” anymore. I also pointed out that if I’m getting disability payments, I can’t earn much money. He said it might be worth it to “be healthy.” I replied that it wouldn’t be worth it if we couldn’t afford to pay for food, clothing, or shelter, so our overall health would suffer. (Besides, I’m not so sure that a lot of people on disability have access to better care than I would, just because they have more options available.) Mike and I are still pretty sure that, despite the high cost of everything, given all our options, we’re still better off with me working as much as possible and remaining uninsured (though TRYING to find insurance) and paying for things out of pocket, making payments as/if necessary than any of the other options so far presented.
I’m still researching, using my contacts, the support group, every connection I can think of. I’m crossing my fingers. Dr. Lee even went so far as to suggest that perhaps everything I experienced was just a perfect storm with the hormone fluctuations from the miscarriage, my weight, etc., and that maybe now my body is back in its normal place and isn’t making excess CSF any longer and it’s the diamox and topomax giving me the headaches. I’m not sure I’d go that far yet, though it’s a nice thought.
And finally, on our way home from all of this, I heard back from the neurologist’s acting nurse. She said she had been waiting for a response from him to her email. He said:
-He is not aware of Topomax causing depression or anxiety but knows that anticonvulsants (which Topomax is) in general can cause them. (The information about depression and anxiety in relation to topomax was a brand-new insert with my topomax prescription starting in December, so it stands to reason that he wouldn’t necessarily know about it yet.)
-He doesn’t think stopping the iron supplement would cause the headaches but that the depressed and anxious feelings could.
-I was on the topomax to control the IIH headaches, but I may not need that anymore.
-He wants me to cut the topomax dose by half (either cut the pill in half at morning and evening OR take only 1 dose per day), and if that doesn’t help the anxious and depressed feelings after 4 days and I’m still concerned, I should call back, and we can try another medication.
So, of course, it is entirely possibly that it is my condition, and not the medicine, causing the depressed and anxious feelings, but I’d like to see how this goes. Perhaps I’ll notice a difference in some way, either in pain (increased or decreased) or in anxious feelings.
So, now we’re back with a clean slate. Tonight, I’ll take my medicines as I’ve been taking them. I’ll probably eliminate tomorrow night’s topomax dose. I’ll stop doing strenuous exercise, and just walk or use the lighter exercises on the WiiFit (rather than the more strenuous EA Sport Active exercises that I was doing). That way, I’m back to where I was at the beginning of the month, when I was feeling so good and better, and the only change with be the topomax. (I sure don’t like being on the verge of tears all the time. I can be perfectly fine one second, then one little thought or word can just make me nearly break down, and that drives me nuts. I hate not being able to hold myself together a little better than that. I’d sure like to find out that’s caused by a medication rather than this condition, because that’s probably the thing that’s making it hardest for me to cope with everything right now, I think....I feel like my coping abilities are just derailed.)
Saturday, January 9, 2010
What a Beautiful Mess
Well, good news on a few fronts. First, when I called in one of my medications for refill today, we learned that it will only cost $65 a month instead of $145. We aren’t sure why, but we think it’s because of the special Rx discount program for residents of our county. The other one will still cost $208 a month, we think, but this one savings was big enough savings to make us at least a little relieved, and we managed to get the really expensive one filled just before my Medicaid extension ran out at the end of December.
Second bit of good news is that Mike’s unemployment coverage doesn’t seem to have run out. He just had to put in the first week’s waiting period, so we have a week of no income from that front. That’s not great, considering that my freelancing has been nearly at a standstill for a couple of weeks (one project a week, at half or less of what I need to be making a week), but we can deal with it so long as it doesn’t drag on.
The third bit of good news is that Mike feels his interview on Thursday went well. He is one of five people being considered for the position, and he feels his chances are good. He is the only one with chemistry experience, which they really need. Plus, he has a little bit of management experience and experience with manufacturing and polymers from his job at CSI in Crawfordsville. Callbacks are supposed to be done late next week, so we’re keeping our fingers crossed that Mike gets to be one of them. Or even that they just decide to hire him outright with no need to do callbacks. Lol. Maybe that’s a bit too much to hope for, but at least there’s some more hope in our household.
My vision has stopped making drastic improvements, so it’s really hard for me to tell if change is being made. Mike seems to think my responses have improved when he “tests” my periphery, so maybe it is. Or maybe I’m just learning how to cope a little better. But I’m finding in the past week or so that I’m not nearly as sensitive to light glare and different types of light as I have been for the past several months, and I’m having an easier time reading small fonts on the TV at a distance than I was. It’s really hard to tell, though, if holes in my vision are clearing up when I can’t even tell in the first place where the holes were/are. I can read smaller and smaller things more easily still, so I’m led toward thinking my visual acuity is improving more, but I really think that has a lot to do with the obstructions being gone so I can actually make things out better. Bah, but who knows? (I still start to panic sometimes, like trying to walk in snow in a strange parking lot, when the snow blind seems worse than it ever did before my eyes had problems and when I couldn't distinguish any different depths and people are walking by quickly and cars are zooming by but all I can do is shuffle along and hope I don't fall or stumble. Nearly every day, I think about how much I feel like I'm "old before my time," having vision problems I "shouldn't" be having until I'm in my 70s or 80s, at least. And I know how they feel, I think.) I just try to keep my faith and keep praying, as my husband and friends remind me to do.
So, all in all, we’re doing better here in the Stringham household, though trying to avoid going out. The “winter storm” that hit the other day only brought us a few inches (5 or so) of snow, and the roads are clear, but the drifts at the end of our driveway actually made the Montero get stuck the other day so that we had to shovel it out a bit, and getting the mail feels like going wading in knee-deep water.
* Stringham high: Less-expensive drugs than we thought!
* Stringham low: Winter blahs
* Stringham super-high: Mike had an in-person INTERVIEW!
Second bit of good news is that Mike’s unemployment coverage doesn’t seem to have run out. He just had to put in the first week’s waiting period, so we have a week of no income from that front. That’s not great, considering that my freelancing has been nearly at a standstill for a couple of weeks (one project a week, at half or less of what I need to be making a week), but we can deal with it so long as it doesn’t drag on.
The third bit of good news is that Mike feels his interview on Thursday went well. He is one of five people being considered for the position, and he feels his chances are good. He is the only one with chemistry experience, which they really need. Plus, he has a little bit of management experience and experience with manufacturing and polymers from his job at CSI in Crawfordsville. Callbacks are supposed to be done late next week, so we’re keeping our fingers crossed that Mike gets to be one of them. Or even that they just decide to hire him outright with no need to do callbacks. Lol. Maybe that’s a bit too much to hope for, but at least there’s some more hope in our household.
My vision has stopped making drastic improvements, so it’s really hard for me to tell if change is being made. Mike seems to think my responses have improved when he “tests” my periphery, so maybe it is. Or maybe I’m just learning how to cope a little better. But I’m finding in the past week or so that I’m not nearly as sensitive to light glare and different types of light as I have been for the past several months, and I’m having an easier time reading small fonts on the TV at a distance than I was. It’s really hard to tell, though, if holes in my vision are clearing up when I can’t even tell in the first place where the holes were/are. I can read smaller and smaller things more easily still, so I’m led toward thinking my visual acuity is improving more, but I really think that has a lot to do with the obstructions being gone so I can actually make things out better. Bah, but who knows? (I still start to panic sometimes, like trying to walk in snow in a strange parking lot, when the snow blind seems worse than it ever did before my eyes had problems and when I couldn't distinguish any different depths and people are walking by quickly and cars are zooming by but all I can do is shuffle along and hope I don't fall or stumble. Nearly every day, I think about how much I feel like I'm "old before my time," having vision problems I "shouldn't" be having until I'm in my 70s or 80s, at least. And I know how they feel, I think.) I just try to keep my faith and keep praying, as my husband and friends remind me to do.
So, all in all, we’re doing better here in the Stringham household, though trying to avoid going out. The “winter storm” that hit the other day only brought us a few inches (5 or so) of snow, and the roads are clear, but the drifts at the end of our driveway actually made the Montero get stuck the other day so that we had to shovel it out a bit, and getting the mail feels like going wading in knee-deep water.
* Stringham high: Less-expensive drugs than we thought!
* Stringham low: Winter blahs
* Stringham super-high: Mike had an in-person INTERVIEW!
Monday, December 21, 2009
Just in Time for the Holidays
Dad called just as I was falling asleep last night to say he had taken Mom to the hospital. (Some of you will recall she had to have surgery last year because part of her small intestine had died and they had to remove it.) Last night, Mom noticed the same kind of pain she had been having that last time, so she had Dad take her in. The doctors don't know much yet, but they've done a CT scan or an MRI (depends on which parent you ask) and found some adhesions and are pumping her full of fluids via an IV, thinking maybe they caught it early enough that they can get the obstruction cleared on its own without having to do surgery. But they’re watching her and waiting to find out. And waiting for the surgeons to take a look and figure out what they want to do. Yes, it's a wonderful end to the year. And they were out having dinner with friends to celebrate my dad's birthday when she asked to be taken to the hospital, so that was an added bonus. *sigh*
While I was speaking to Mom this afternoon (she’s feeling much better than last night—no pain, but she hasn’t been allowed to eat or drink anything, so nothing could get in there to cause her pain) on the phone, Mike came in to tell me he has an interview after we come back from the holidays! Woohoo! He hasn’t had a phone interview since March of 2009, and this will be the first in-person interview he’s had since August of 2008 (not counting the one where an insurance guy was trying to get him to open his own little agency representation).
The interview is for a production manager position with a company in Plainsfield, not far from the Indianapolis airport. The company has about 40 employees, so they really like having people with a broad range of experience, and the guy Mike spoke with would be his direct supervisor if he gets hired on. The gentleman seemed to really like the fact that Mike had polymer (plastics to you English speakers) experience and a chemical engineering background. He also liked that Mike has some limited experience with manufacturing. The company is pretty new, only 11 months old, but we figure that’s okay. A job is still a job; if the company goes under in a year, that’s another year Mike can draw unemployment afterward if necessary, and if the company DOESN’T go under, Mike gets to be in at the ground level, so to speak.
Well, 2009 sure is doing a number on this family emotionally, let me tell ya! But right now, we’re okay with it as it stands.
Here's to a better 2010 (and getting this year over as quickly, quietly, and painlessly as possibly)!
* Stringham high: Mike's phone interview.
* Stringham low: Mom's hospitalization...but we're praying for her.
* Stringham super-high: Mike's scheduled LIVE interview!!!!
While I was speaking to Mom this afternoon (she’s feeling much better than last night—no pain, but she hasn’t been allowed to eat or drink anything, so nothing could get in there to cause her pain) on the phone, Mike came in to tell me he has an interview after we come back from the holidays! Woohoo! He hasn’t had a phone interview since March of 2009, and this will be the first in-person interview he’s had since August of 2008 (not counting the one where an insurance guy was trying to get him to open his own little agency representation).
The interview is for a production manager position with a company in Plainsfield, not far from the Indianapolis airport. The company has about 40 employees, so they really like having people with a broad range of experience, and the guy Mike spoke with would be his direct supervisor if he gets hired on. The gentleman seemed to really like the fact that Mike had polymer (plastics to you English speakers) experience and a chemical engineering background. He also liked that Mike has some limited experience with manufacturing. The company is pretty new, only 11 months old, but we figure that’s okay. A job is still a job; if the company goes under in a year, that’s another year Mike can draw unemployment afterward if necessary, and if the company DOESN’T go under, Mike gets to be in at the ground level, so to speak.
Well, 2009 sure is doing a number on this family emotionally, let me tell ya! But right now, we’re okay with it as it stands.
Here's to a better 2010 (and getting this year over as quickly, quietly, and painlessly as possibly)!
* Stringham high: Mike's phone interview.
* Stringham low: Mom's hospitalization...but we're praying for her.
* Stringham super-high: Mike's scheduled LIVE interview!!!!
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