Diet and Your Health, Part II

After an extremely long delay, here is my second post on eating a healthy diet.  I've been eating a relatively healthy diet over the years, but for the past year or so I have been more consistent and made some pretty significant changes that have made a huge difference in how I feel.  It's not easy, but if you plan ahead and really make a decision to give it your all, I think you'll really be happy with the results.  And, personally, I noticed a big difference in my energy levels (ie they tanked) when I "fell off" my daily green regimen and ate too many processed foods over the holidays.

And remember, it's not magic, so it's not going to work instantly. You have to commit for at least 10-14 days to feel the true benefit of a clean diet.  For the first several days, you may actually feel worse as you “detox” from all the addictive substances that we put in our body, like gluten, processed foods, and sugar.  So stick with it for at least a couple of weeks, even when it’s unpleasant in the beginning (you should start feeling less tired with less headaches around day 4 or 5), and then you can start feeling “lighter” and having much more energy.  And with those of us with an illness, every bit of energy makes a difference!  So once your energy starts to improve, the amount of work required to eat a clean diet will become easier as well and will be something you crave, instead of a chore.

So what have I done?  Well, I first based some of my changes on the recommendations of Terry Wahls, MD, a women with severe progressive MS that was able to reverse her disease through diet.  Pretty amazing story and if you haven't heard of her, I'd recommend you check out her TED talk and this article online at the Huffington Post for more information on what she recommends.  I also used (and highly recommend reading) The Blood Sugar Solution by Mark Hyman, MD.  I have personally tried his diets, and they are very sound scientifically.  He is also great about giving you most of the information online, not just so that you have to pay or buy the books.  Other books by Dr. Hyman include Ultrametabolism, and The UltraSimple Diet.

And overall:

• Eat as many greens as possible.  I eat at least 3-5 cups of greens a day, including salad greens and kale or spinach.  This part is what I think has made the biggest difference for me.  I try to have a huge salad for lunch and add in a green smoothie with kale at some point during the day.  Kale is a nutrient powerhouse and well worth finding a way to work into your diet.  It takes about a week of doing this consistently, and you should notice an improvement in your energy levels. And, yes, it is possible to make a kale smoothie that you will actually enjoy!  I feed them to “nonbelievers” all the time. :) 
• Add vegetables to everything!  The more vegetables you can eat, the better you will feel.  Try to add vegetables to every meal and snack.  Your dinner plate should be 1/2 vegetables, 1/4 starch or grain, and 1/4 meat or protein.  Add them in to anything you can think of…for example, if you’re making tacos or chili, add in finely diced carrots, peppers, tomatoes, and chopped spinach at the end.  You won’t notice the taste as much as you might think, and your body will thank you for it.
• Eat the rainbow.  The more colors you can eat, the better.  Colors=antioxidants!
• No more sugar.  I know, it's really hard.  I have been a sugar addict my whole life, so this was tough for me as well.  You may feel worse for the first few days without it because it really does act as an addictive substance, but it will improve as you stick with it.  I use fruit for "dessert" now, and may mix it with nuts and coconut, and that's a pretty satisfying dessert or snack that will help with those sugar cravings.  A program that people swear by is the 21 day sugar detox.  I haven't tried it specifically, but a lot of people have found it to be helpful for them.  Also, watch out for those "hidden" forms of sugar in everyday foods that you wouldn't think have sugar...like bread, salad dressing, mayonnaise, ketchup, etc.  Always read those labels!
• No gluten.  Another tough one, but again very worth it.  I have been obsessed with bread for most of my life, but after being off of it for a while, I find that I really don't miss it that much.  The part that's hard is training yourself how to eat without bread, crackers, cereal, etc.  But once you do, it's really helpful, especially if you are someone who is prone to bloating as I am.  Being off gluten and sugar has made a big difference in how bloated my stomach is (and when I fell off my diet for a few days over the holidays, the bloat came right back!) and I feel lighter and less sluggish.
• No processed foods.  If you're getting rid of gluten and sugar, that will eliminate most processed foods from your diet.  The components of processed foods are not good for you and can make you feel sluggish, not to mention the number of chemicals that they contain.  It may be easy to stuff your face with crap, but it won't help your health at all.
• Stick to whole foods.  The less a food is processed, the better it is for you.  Less flours and sugars, more vegetables, meats, eggs, and fruits.  The closer your diet is to natural, the better.
• Reduce grains.  I admit it, I was also addicted to grains.  When I looked at my diet, I saw that grains made up the majority of my diet...every meal had grains.  Cereal, bread, crackers, rice, etc.  I'm not someone that says that you shouldn't have any grains, because I find that having some grains in my diet has helped me feel satiated.  I bake a "bread" with millet (see recipe link below) that I often have in the morning, and sometimes add rice to my meals.  Just don’t have it be a part of every meal.
• Reduce or remove dairy.  Dairy has caused minor problems for me over the years, so I made a decision to get off of it, and it has been helpful for me.  I'm not sure how much it has contributed to my increased energy levels since I did everything at once, but I think it has helped me, so I'm staying off of it.  There are lots of substitutions out there now that make it much easier to get off of dairy: coconut yogurt, coconut milk, almond milk, coconut oil (for butter), etc.
• Don't stress about every gram of fat.  If you're reducing your grains, you're going to want to eat more fat to keep you full.  I eat a lot of nuts, seeds, nut butter, coconut, and coconut milk and that really helps to keep you full.  I was always obsessed with "low fat" growing up, but now I realize that most of the time low fat just means that they increase the sugar to take out the fat.  And sugar is WAY worse than fat!  And I have an easier time losing weight with higher fat than I ever did with low fat.
• Try to go organic or grass fed whenever possible.  When you have existing health problems as we do, the last thing you need is added chemicals in your food.  Focus on organic foods and pastured meats.  Spend the extra money here that you won’t be spending on all those processed foods.

I'm sure you're completely overwhelmed by this now!  It seems like a lot, and it is, but you can do it slowly if that works better for you.  First remove sugar and wheat, then work on the rest.  Or, if you think there's no way you could ever do this, then at least reduce your sugar and processed food intake as much as you can and add as many vegetables and whole foods to your diet as possible.  But I really recommend that you do it all because it makes a big difference for me!  Below are some recipes that I have found to be useful for me in this health journey.  And don’t forget about those tips and tricks in Part I of Diet and your Health!

Recipes I use:

• Easy Baked Chicken Thighs.  Very easy, very good.  Easy to make a ton and then keep on hand for several days.
• Meat and Spinach Muffins.  A bit of a pain to make, but they freeze very well and are a good way to have greens for breakfast.
• Balsamic vinaigrette. (1 part balsamic vinegar : 2-3 parts olive oil, then salt, pepper, and dried shallots or onions.  Place in a jar and shake).  I like to make a big batch of this and keep it on the counter to use throughout the week.
• WHOLEmade bread.  It's quite a process to make it, but I try to avoid yeasted breads so this is the best option for me.  It also doesn't use flour at all, just the whole grains soaked and blended over 2-3 days.  I’m sure there are other recipes out there that are less work though if this is overwhelming.
• Pumpkin custard.  Good for a satisfying dessert when you really need it, and it’s good without the sweetener too.
• Green smoothies.  Try to work your way up to having more greens than fruit in the smoothie because too much fruit can cause problems of its own.  Coconut water helps add natural sweetness without needing to increase the amount of fruit.  I’m at the point now where I can use ½ cup fruit and 3-4 cups greens.  You can even add a few drops of vanilla stevia if you need more sweetness without having to add more fruit.
• Baked Oatmeal To Go.  For when you want to have a bit of grain and a fast way to have breakfast, and good without the sweetener too.
• Healthy Snack Bars.  Like Larabars, with some whole nuts; good for emergencies.
• Raw Chocolate Brownie Bites.  Great when you need chocolate for a snack.  They keep well in the freezer.

Good luck and healthy eating!

Diet and Your Health, Part 1

Photo runthreeseven.files.wordpress.com

I hope everyone had a wonderful holiday season!  I'm sure many of you overindulged in holiday goodies like I did, so I thought now would be a good time to discuss how a healthy diet can help make you feel better.  I know that I have mentioned diet in passing in the past, but this time I'll go a little more in depth as to what I do and how it has helped me.  I thought I'd be able to do this as a single post, but the more I write, the more I realize that it's best to divide it up into a series of posts so that you won't get too overwhelmed with one massive, outrageous post.

We all "know" that we should eat well, but how many of us actually do it?  It's just so easy to scarf down convenience foods or go out to eat, especially since people are busier than they have ever been before.  And it's even worse for those of us with serious health conditions, because sometimes we physically can't fix a complicated healthy meal.  But the catch-22 is, those of us with health problems need healthy food more than everyone else because our bodies require more nutrients to deal with our illnesses.  So how can it be done?  Planning, planning, planning.  And this from the girl that HATES menu planning, but it's really the only way to consistently eat a healthy diet with my serious health issues.  It doesn’t have to be rocket science, it just has to help you make sure that you don’t have times where you are starving and end up eating something that you shouldn’t just because you need food fast and don’t have anything ready.  I’m not good about planning a whole week in advance, but I try to do at least a day or 2 at a time so that I have things a little bit more organized and am not panicking when 6:00 rolls around.  Below are some ways that you can make eating healthy easier, and assist with meal planning.

• Prep foods ahead of time.  I peel and cut a bunch of carrots all at once so that they are easy to grab as a snack or to quickly chop into a salad without having to go through all the peeling every time.  Once you're already having to chop or peel some veggies for a recipe, it’s not that much additional work to just do a few more and save them.  Just keep the carrots in your fridge, and grab them as you need them.  You can also chop extra veggies when you're making a meal and keep them in the fridge for when you need them next time.  Many veggies keep well when prepped ahead (carrots, celery, broccoli, cauliflower, etc).
• Divide up your cooking time.  This one is specifically for people with health problems.  I never seem to have quite enough energy to make a whole meal from start to finish in one fell swoop, and if I do it, I don’t have enough energy to eat the meal!  The thing that I have found to be helpful is to break up the meal prep into chunks throughout the day so that I can get it all done without killing myself.  For example, I might chop several things, then take a break for 30-60 min, then chop some more, or sauté and then set aside, etc.  Just divide it up into chunks you can manage.
• Wash all your lettuce and greens at once and keep them in bags with paper towels and they will stay fresh for when you need them for a salad (makes it much faster to grab lettuce for a salad if you don't have to wash it each time).  I recommend trying to eat a large salad each day with some protein so that you can get as many vegetables and greens into your day as possible.
• If you're cooking a meal, make extra and freeze it!  You will have days where nothing can make you cook, so having meals in the freezer that you can grab and defrost will make a world of difference for you.  Make giant batches of soups or stews, chili, etc to freeze and grab for a quick meal.  Leftovers are your friend.  I make meals that serve at least 4-6, so even if it won’t freeze well, I’ll still have leftovers for a day or 2.
• Make a large quantity of protein for use throughout the week.  If I’m roasting/grilling chicken, I’ll make a huge batch and keep it in the fridge for lunch or dinner during the week.  It doesn’t take any more work to roast extra, but it saves you lots of time in the long run.
• Buy some good quality paring knives.  When I'm making a salad each day, it makes it much easier to just quickly chop them directly into the salad.
• Have a protein source with every meal or snack.  This will help you feel fuller over the day.  Protein sources can be nuts, beans, meats, or eggs.
• Buy high quality lunch meat (no fillers or crap in them) and use that as an easy protein on top of your salad.  Other options are making extra protein the night before with your dinner to use on a salad the next day.
• If you need some quick convenience foods, make sure they are high quality without lots of junk in them.  Trader Joe’s has some good quality items.  Also, if you want crackers, Mary's Gone Crackers and Nut Thins are good options.
• There are online meal planning resources that might help give you ideas on how to start planning (there are many on the web): 
• 100 Days of Real Food
• Simply Sugar and Gluten Free (Meal Planning made simple)
• Paleo Plan (you can access some plans without signing up)

·         Sources of healthy, gluten free online recipes:  

o    Healthful Pursuit

o    The Daily Dietribe

o    The Spunky Coconut

o    Against All Grain

o    The Civilized Caveman

In the next post, I’ll describe what I have done recently that has improved my energy levels and made me feel better overall.  I’ll go into more detail about what I eat, and what I avoid.

A New Freedom

Hi Everyone!
No, I'm not dead (despite what you must have thought since I have been MIA for so long).  I've been doing fairly well lately, actually, just really busy!  Things have been improving for me over the past few months due to changes in my treatments for Bartonella and Protomyxozoa rheumatica (a weird protozoa that has been found to often be present in those who are infected with Bartonella).  I'm planning on doing a series of posts on Bartonella and my long battle with it since I've alluded to it in the blog but never really covered it fully.

Here's something that has been a HUGE change for me recently...I've started driving again!  I haven't driven by myself in over 7 years because of my extreme dizziness, but it's finally safe for me to drive now.  My dizziness has hugely improved and I don't have to worry anymore about having a problem while driving.  It's very exciting to have a little bit of freedom reintroduced to my life.  I only drive once or twice a week, but since up until now I have been essentially trapped in my house at all times, it's a wonderful feeling for me.  And, my husband was so excited that I'm doing better, that he bought me a car to drive around in!  He's the best, isn't he?  I chose a practical, yet pretty, CRV. :)  It's great and I really love it.

So things are going pretty well here!  I'm certainly not normal by any stretch of the imagination, but just having the freedom to run to pick up drugs at the pharmacy, or go by the farmers market, has been really great for me.  I hope that all of you will soon be at the place where you can leave the house by yourself, if you aren't already.  I'm not taking any of it for granted!

How to improve your toxic environment

Source

We all know that our households can have some of the highest concentrations of toxins (indoor air is more contaminated than outdoor air because it is sealed inside our houses so well).  The EPA estimates that indoor air is 3 times more polluted than the air outside, and other sources suggest up to 10 times more.  The off-gassing of our furniture, carpets, paints, and cleaners can cause or worsen many health problems.  And those of us with chronic illnesses can have a more difficult time removing toxins from our bodies, so it's all the more urgent that we do something to help our bodies help themselves.

Well that certainly doesn't sound like the most ideal environment for healing!   But don't despair...there are lots of ways to improve your indoor air quality.

• Have you heard that having plants in your house can help your health?  There are many indoor house plants that are amazing at detoxifying the air around them, purifying it, and increasing oxygenation. NASA did a study of 12 different indoor plants and rated their ability to purify the air of toxins, including benzene and formaldehyde. The complete study is at this website: NASA Indoor Landscape Plants for Indoor Air Pollution Abatement.  A quick list of some of the plants includes:  Golden Pothos, Peace lily, English Ivy, Bamboo Palm, Janet Craig, Warneckel, and Gerber Daisy.  Other sources list philodendrons, ficus, spider plants, and mother in law's tongue (snake plant).  There are lots of choices out there, so find the best one for you and your house.

• Use more natural cleansers. VOC's (volatile organic compounds) and other chemicals released when using cleaning supplies can contribute to chronic respiratory problems, allergic reactions, and headaches according to a 2009 study in Environmental Impact Assessment Review.  Choose cleansers that have reduced VOC's and low fragrance.  I like products by Better Life and Ecover, but there are many natural brands to choose from now.  Also, you can make your own cleansers using vinegar, baking soda, and lemon juice to clean surfaces.

• Avoid using air fresheners.  They have also been found to contribute to respiratory problems.  If you must have a fragrance, try using essential oils in a diffuser to have a more natural scent.

• Use paint with no VOC's.  There are lots of brands now that offer low to no VOC's, so you should still be able to find the perfect color without suffering.

• Buy furniture and carpets that are "green" and have reduced off-gassing, or buy used furniture that has finished giving off gasses.

• Eat organic fruits and veggies.  Ok, it's not about air quality, but it's important nonetheless.  The less toxins you put into your body, the better.  Here's a list of what fruits and veggies to buy organic: the dirty dozen.

• Use more natural beauty products.  We sometimes don't really think about the products that we put on our skin, but your body absorbs whatever you put on your skin to some degree, so make sure you put the best quality products onto your skin.  Avoid common carcinogens and toxins such as Sodium Lauryl Sulfates and Parabens.   Here's a list of a Toxic 12 to avoid. 

• Remove your shoes when you enter the house.  Your shoes can have all kinds of nastiness on them, including bacteria and viruses.  It's best not to track that through your house if you can prevent it.

• Vacuum and clean frequently (or make your spouse do it!) to remove dust and allergens and keep your respiratory system working at its best.  If you have to do it yourself, I recommend wearing a dust mask to prevent symptom flare-ups.  A HEPA filter for your vacuum is best, if you have one.

• No smoking (duh!)

• Change your air filters monthly.

• Make sure your humidity level is below 40% and you have no mold growth in the house.

I hope these steps help you have a more healthy environment in which to heal.  We Potsies need all the help we can get!  Please feel free to post any comments about other tips and tricks that you have found to be helpful in your home.

Medical ID Card

For years I have been thinking that I needed to get a medical ID card, but for years I have been putting it off.  We all know how complex our medical conditions can be, especially those of us with dysautonomia, so it makes sense to have an emergency medical card in our wallets to identify our problems, drugs, and doctors.  My Dad recently found a website that will create a printable id card from information that you enter into their system.  The site says that they do not save or use any of the information that is entered on their site.  The card lists your emergency contacts, doctors, medications, illnesses, and any allergies you have.  You can print it out to a wallet size (front and back have info) and then laminate it for keeping in your wallet.  It is also a convenient way to save space on your medical ID bracelet, since you can write “see card in wallet” for extra information.  Pretty cool, huh? 


This is just the first site that I have come across, so if anyone has other sites they have used, please post them in the comments so everyone can have options. 

Raynaud’s Syndrome and POTS

Winter is in full swing, and for those of us with Raynaud’s disease, that means frozen hands and feet. It seems that there are quite a few of us out there that have coexisting POTS and Raynaud’s syndrome. A few articles have found a link between autonomic dysfunction and Raynaud’s disease, but I haven’t been able to find much out there about how commonly they are seen together. I know many people who have both, however, so I thought I’d post about it. And, of course, none of this is a substitute for medical advice so be sure to contact a doctor if you are having any problems.

For those of you lucky enough not to know what it is, Raynaud’s is a phenomenon in which the small blood vessels of the hands, feet, and or tip of the nose “overreact” to cold temperatures and cause excessive narrowing and therefore restriction of the blood flow. This can then cause the extremity to become 1) white due to lack of blood flow, then 2) blue due to cyanosis (lack of oxygen in the blood in that area), then 3) red when the blood flow returns. It is an uncomfortable problem that causes numbness to the area, and pain and tingling when rewarmed (kind of like when your toes get too cold in the snow and it hurts to rewarm them). Raynaud’s can be primary (due to unknown causes) or secondary to other diseases (such as lupus, RA, scleroderma, carpal tunnel syndrome and others) and may be autoimmune in nature.

Much of the time, Raynaud’s is an annoyance without too much of a long term problem; however, if you are unlucky enough to have Raynaud’s and POTS together, you also have the problem of (usually) being put on beta blockers, which almost always make the problem of constriction of those blood vessels much, much worse. I had mild Raynaud’s prior to POTS, but after taking beta blockers to help with POTS, my Raynaud’s has become quite severe, especially in my toes. I was off of the beta blockers for a while, and it seems that my Raynaud’s is still pretty bad without them now, but much worse on them. Because my toes are so sensitive to any temperature change, I have to wear wool socks all year round, yes including summer (!) because otherwise the blood flow to my toes completely stops and is slow to return so I run the risk of developing ulcers without warming and massaging the blood back into the area. Here’s an example of my toes in the middle of the summer at the beach (ie it’s like 90 degrees out):

Looks pretty, doesn’t it? Usually it’s much more severe, but at least I can give you an example of what it looks like (this is the best picture I’ve been able to get of it).

What helps?

• Keeping warm: Unfortunately, many of us need to wear gloves and wool socks to keep warm enough to keep from triggering an “attack”. As I mentioned above, I wear wool socks 365 days a year to prevent the very unpleasant attacks. It can also be helpful during the winter to keep toe warming packets on hand in case of severe attacks (I keep them in my purse). I also purchased a paraffin bath a few years ago, and that can be nice because it is warm and sort of “cocoons” your hand or foot to keep it warm (I’ve never used it during an acute attack though, just with mildly cold hands or feet, and the container is kind of big, and you have to keep it heated for the wax to stay liquid). I also always wear socks to bed, and have even worn thin gloves to bed when I’m really having flare ups.
• Reduce stress: stress has been linked to an increased frequency of attacks
• Avoid smoking- it’s been linked to an increase in constriction of vessels, therefore an increase in attacks
• Reduce caffeine (I have to admit, I haven’t been able to try this one because I love my morning coffee!) as it has also been linked to increased vasoconstriction
• Some drugs can worsen Raynaud’s, such as beta blockers, some migraine meds, some chemotherapeutic drugs, some over-the-counter cold medications and narcotics…drugs that cause vasoconstriction.
• There are also some medications that may help with severe Raynaud’s, but are usually not required (see your doctor if you think you might need this kind of prescription)

What if I’m in the middle of an attack?

• I find that warming the area is the most important first step. Try to place the hand or foot in a warm area (under your arm, knee, sit on them, whatever it takes!) I usually will try to massage the area to get the blood flowing again, which will eventually help it warm and improve. If it’s really severe, you might want to submerge the area in warm (not hot) water to rewarm the area. If the water is too hot, it will really hurt (think freezing cold hands in the snow then straight to hot water…not pleasant). If you can’t get the area to refill with blood after warming, it’s best to go to a doctor to make sure that you don’t run the risk of developing necrosis in the area, although that is rare.

Do any of you have any other tips that you have found helpful for Raynaud's?  I'd love to hear your stories.

The Dorothy Shoe Project

Michelle at Living With Bob has come up with a fabulous idea to bring some fun and awareness for people with dysautonomia.  In her post,The Dorothy Shoe Project, she discusses her idea to create a number of her iconic Dorothy shoes to send to people with dysautonomia all over the world…the US, the UK, Australia, New Zealand, and more!  The project is open to anyone out there with any kind of dysautonomia (ie POTS, NCS, PAF, or any other kind), and apparently the numbers are steadily growing.

The other thing that is so great about those shoes is that Dorothy was caught in a tornado in the Wizard of Oz, just like those of us with dysautonomia feel like we’re trapped in our own personal tornadoes.  So it’s fun and fitting, don’t ya think?

I’m going to participate, and I have no ideas of something clever to do with them yet, but I’m sure I’ll think of something, right? So any of you out there with dysautonomia of any kind, feel free to email Michelle at Rusty.Hoe@thedorothyshoeproject.com to add your name to the list of POTSies ready to don some fancy new shoes!

Who doesn’t love beautiful sparkly red Dorothy shoes?  Now if we could just get the heel clicking to work…

Happy Holidays

(©www.angelapascale.com)
I saw this card on Living With Bob yesterday, and I just had to repost it because it is so great.  The card was made by Angela Pascale for the Vanderbilt Autonomic Dysfunction Center, and I have to say she did a wonderful job capturing the tilt table test experience!

I hope you all have a wonderful holiday season!  I really do plan to post in the coming year since I’ve been so horrible about it this year.  I wish you all health and happiness.

Hot, hot, HOT

I’m finally back! Sorry once again for the horribly long delay but, as usual, I have had some rough times lately and have just not felt up to posting. But I’ve got an energy burst, so I’m back to say hello!

Well, this has been a rough summer, hasn’t it? The temperatures have been insane across the country. I recently read that Dallas has had over 30 days straight of temperatures in the triple digits!! Talk about a difficult summer for those with dysautonomia. I’ve been pretty much jailed inside my house for the summer due to the heat. I hope that you all are hanging in there and keeping as cool as possible.

Last summer I listed some Summer Tips for POTSies, and I thought I’d mention a few of those again for some ideas for how to stay cool for the rest of this summer (but check out last year’s post for a more complete list):

Frogg Toggs Chilly Dana: This bandana absorbs sweat and can keep you cool. Just keep it wet and its moisture will evaporate and continue cooling for hours.

Cooling scarves: These wraps contain crystals that hydrate after being soaked in water. They then have evaporative cooling action that works from hours to several days.

Personal Fans: Handheld fans with or without water sprays can be life savers once you really get overheated or to prevent that from happening.

Head Scarves: I find that sometimes I just need to get my hair all the way off of my neck, and wearing a scarf or bandana around your hair can be a great solution.

Sun hats: It always helps to keep the sun off of your face and neck as much as possible, so wear a hat if you can!

And, as always, HYDRATE! Whether it's water, or gatorade, or Kombucha (a new favorite), or Coconut Water, enjoy lots of it! Good luck staying cool and healthy everyone.

Salt, Glorious Salt

As most of you know, those of us with dysautonomia are prescribed a very high sodium diet by our doctors (5000-10000mg a day usually) to increase our blood volume and prevent drops in blood pressure. This can be a daunting task for those of us not used to such a huge amount of salt.

After my POTS diagnosis, I realized that salt was going to be a huge part of my life and, well, I wasn’t a big fan at that point (gasp!). So…I decided to search around and find as many different kinds of salts as I could to add some extra excitement to my meals. Once I started looking, I was amazed at how many different kinds of salts exist out there. And not only do they exist, they taste amazingly different! I had no idea that different salts added unique flavors to your meals. I had been a sea salt and kosher salt user, but that was the full extent of my knowledge. Now I know that the specific minerals from the area that the salt is mined add a different flavor to each type. For example, the red coloration of Alaea (Hawaiian sea salt) comes from the clay in that area. I know, it sounds gross, but it’s actually delicious. One of my favorites in fact.

Over the years, I have accumulated quite the unique and beautiful salt collection (in my opinion). Such a collection, in fact, that we installed a shelf in our kitchen that is dedicated only to my salts, and it is overflowing! I think it is quite lovely as well.

I encourage all of you POTSies out there to explore the different kinds of salts that the world has to offer. It definitely made my crazy salt consumption a little more exciting. Although I love many of the salts, I think my favorites are Alaea, Maldon, and Fleur de sel. And have you ever tried adding salts to the tops of different desserts? It can be quite lovely depending on the dessert (chocolate loves salt!). Have fun exploring the wide world of salt!

Some details about the salts that I have:

Many of these salts are hand harvested, which is part of the reason they are so expensive.

Maldon: a finishing salt that is best applied to a dish after it has been plated; b/c it is flake salt, it dissolves quickly and evenly and has a lovely flavor

Fleur de sel: means "Flower of salt" in French; has a lovely, delicate taste that is great to add as a finishing salt. I’ve even had it on chocolate…yum!

Alaea: Hawaiian sea salt contains a small amount of harvested Hawaiian clay that enriches the salt with Iron-Oxide (which makes it red). It has a great flavor, and I use it on all kinds of things, especially when I'm roasting vegetables/meats.

Grey Salt: a natural, unrefined sea salt that is supposed to retain many of the minerals from the clay where it was mined; many believe it to be one of the best salts available

Himalayan salt: this salt is harvested from deep in the Himalayan Mountains, and has a high mineral content that is often sought after for health benefits (there are a myriad of articles on the web about it)

Kosher salt: Great for using as an everyday salt, I add it to almost every recipe. It has a mild taste and doesn’t overpower your dishes.

And it doesn’t stop there: there are black salts with charcoal, salts mixed with every herb out there, even salt with vanilla. Try them out…It will definitely perk up the flavor of the dishes that you have to flood in salt every day!

Blood Draw Adventures

It’s a record (for me).  24 vials of blood in one sitting!   My husband was with me, and insisted on taking a picture of all the vials after we were done (which now I’m happy he did b/c I can share it).  Fairly ridiculous, huh?  Even the phlebotomist was surprised by how many vials they needed, so I feel proud.  I bet I’m even more pale than usual now!

Anyone else have any exciting blood draw adventures?  I’m SURE you do.  Ahh, the things we POTSies get excited about…

Puppies and POTS

I hope everyone had a wonderful holiday season, and are not having too much trouble recovering from all of the activity. I also hope you tried not to overdo it so much that you can barely move now!

I wanted to apologize for how few posts I have put up over the past few months. Things have been a little tough in my neck of the woods, with many serious illnesses in my nuclear family that we have all been struggling with. I keep telling them, that I’M the only one that’s allowed to be this sick!! Hopefully 2011 will be a much better year for us all.

In the spirit of happy new beginnings, I want to share the new addition to my household: our new puppy, Loki! Since he is named after the Norse God of Mischief, you get a little idea into his personality… He’s a very sweet boy though, but he does like to torture our adult dog a little bit. And, if you were wondering, POTS and a new puppy are NOT mixing so well! I don’t think I completely thought things through when we jumped in with both feet, but I’m finally getting the hang of it. I am certainly getting the exercise that has been recommended for me since I have to take him out every hour! It was wonderful to have a little break over the holidays when there were 4 of us instead of just 1 to take him out during the day. I think the black circles under my eyes have finally faded a little with my increased sleep time over the holidays!

Here’s a picture of our new little devil! Isn’t he cute?

Okay, I know I’ve said it before, but this time I hope to be able to do it…I plan to post more frequently in the upcoming new year!

Best wishes to you all for a new season of health and happiness!

D is for Brain Fog

Sorry for the delay in posting, but there have been some serious diseases in my family (for once not related to me), so I’ve been very busy and stressed dealing with that and haven’t been able to work on email/web.

So, on a lighter note, I have a great story about the effects of POTS on the brain. We all know that “Brain Fog” can be ever present in our daily lives.  This is a perfect example of a funny (yet kind of pathetic) story about brain fog .

I was recently visiting my in-laws and playing a game called "Scattergories”.  For those of you that have never heard of this game, basically you are given a list of categories and then assigned a letter.  You then have to fill in the categories using only words that start with the assigned letter.

The letter is D.  The keyword is “disease”.  You have 60 seconds.  How many can you come up with?  For me, NONE.  So hmmm, what did I forget?  Maybe that the MAIN DISEASE I have STARTS with a D??  Hello, Dysautonomia!  Wow, that was really bad.  My family decided to give me a point for it anyway to discount the brain fog!

Ugh, I miss my brain sometimes. 

Hooray, Flip Flop by the FDA!

According to The New York Times, the FDA has reconsidered its decision to remove midodrine (ProAmatine) from the market due to the many complaints received by POTS patients like us that find it necessary for everyday living. The FDA has backtracked from it's original decision, and will now allow midodrine to continue to be sold.(YAY!) Finally, the chronically ill are listened to by a government agency…that must be some kind of record! Good news all around.

Please see the link below for the full article from The New York Times.

F.D.A. Backtracks and Returns Drug to Market

FDA Proposes Withdrawal of Low Blood Pressure Drug

This is really scary. I, along with many other POTS patients, rely upon midodrine (proAmatine) to keep my blood pressure at a high enough level that I can stand for short periods and work around the house. The FDA is proposing that they take this drug off the market because studies that verify the clinical benefit of the drug have not been done. I for one can attest to the fact that it is very helpful for many POTS patients. I hope that they reconsider this action and keep this drug available for those of us that find it to be helpful. The press release from the FDA is linked below if you are interested in reading it.

FDA Proposes Withdrawal of Low Blood Pressure Drug

Keep your fingers crossed that they change their minds on this one.

Summertime...and the living is NOT easy!

Ah, Summer...brings back dreams of running wild as a child, swimming, and, oh yeah, fainting in public!

It's lovely to feel like a 60 year old woman in the throws of menopause, isn't it? Not so much. So I have a few tips and tricks that have helped me over the years. I still have a lot of trouble during the whole summer, and have to spend most of my time indoors; but, at least these can keep you from fainting and might make your days a little bit better.

Fans: It can be helpful to have a fan in your house nearby so that you can cool off quickly during "hot flashes". I also carry a tiny hand fan in my purse for "emergency" overheating.

Cooling Neck Wraps: These are cool neck ties that contain crystals that absorb water when submerged for about 30 min, then slowly release it to keep you cool. They are great when you are more concerned about staying cool and keeping from passing out than getting your collar a bit wet. Best for outdoor activities.

Head scarves: I find that my hair can be a real problem for me when I am overheating and anything I can do to get it off of my neck is helpful. Head scarves are nice because they keep the hair completely off of your neck and do not give you a migraine like having your hair in a ponytail can (and, yes, the cheap ones work just fine).

HATS, hats and more hats: a baseball hat or similar style is helpful for everyday shade (shopping, etc). Sun hats are essential for any long exposure to the sun (at the beach, a picnic, etc). I wear a hat pretty much any time that I'm going to be outside for more than 5 minutes!

Scarves: My friend (and fellow POTSie) Ashleigh taught me all about the benefits of scarves. You may ask: "um, it's HOT, why would I use a scarf?" Well, it can be helpful to use a lightweight scarf (i like jersey) to protect your skin if you get overheated (and have skin as pale as a ghost like yours truly), or to use when you change from the outside hot weather to the inside freezing temps. It's an absolutely essential tool for all seasons, just pick scarves that are heavier or lighter based on the temp. I also think it's important to pick really big scarves that fold up small so that you can wear them with any outfit as an accent, but then fold them out like a shawl to cover shoulders if you need it. Luckily, they're also in style now so you can often find them for cheap at places like Old Navy, Target, etc.

Layers: We all know how having dysautonomia means having no control over your body temperature. It can be so maddening to be overheating like crazy just because you had a hot drink, or freezing because you're near the air conditioning unit. One of the best ways to deal with these temperature fluctuations all year is to dress in lots of layers: short sleeve or tank top, scarf, cardigan, jacket depending on the outdoor temp (ie don't wear a jacket in 90 degree weather). This system has been helpful for me in controlling some of the temp changes.

Stay-dry clothing: These lightweight, exercise clothes can be helpful if you are overheating consistently and want to stay cool and dry.

Sunglasses: with dysautonomia comes sensitivity to light...so I even wear light colored sunglasses inside around fluorescent lights, therefore they are even more important outside. Get a few pairs in different shades and sizes (big ones for when it's super bright, smaller and lighter for overcast days or inside).

Some people have also found Cooling Vests helpful if you have a severe problem with the heat or fainting. I have not personally used them, so I can't give any advice, but I know that some people (especially people with MS) find them to be very helpful.

I also think that it's important to stay in the shade if at all possible to extend the amount of time that you can handle being outside. Hats can help some, and if you'll be on the beach for any amount of time it's useful to be under an umbrella.

Sometimes, if I get super overheated, I might use those "fever reducing" ice pack gels that you can get for kids or some similar kind of gel ice pack. It's nice to put on your forehead or neck for a quick cool down. But, at least in my case, be careful not to do it for too long or you'll have to break out the blankets!

And of course, don't forget WATER and electrolyte drinks! The most important tip of all is to keep yourself well hydrated! I probably drink twice as much when I'm in the sun than I do on a regular day inside. Make sure you keep water with you at all times. Also, for more info on electrolyte drinks you can try go to this post.

Hope you guys found this list helpful! I'm sure that I have missed some things, so please feel free to add your tips in the comments section so that everyone can benefit from your advice. Good luck surviving the summer fellow POTSies!

Dysautonomia = Neurasthenia?

I'm sure many of you have read about a condition often seen in the 1800's called "neurasthenia" that many suspect may have been dysautonomia. It's an interesting idea that dysautonomia is not as new as many like to think.

This article from the Heart Disease Blog at about.com has a sympathetic view by a doctor that I thoroughly appreciate. I wish more doctors thought like this!

By Richard N. Fogoros, M.D., About.com Guide to Heart Disease

Yesterday's Neurasthenia, Today's Dysautonomia

Friday April 30, 2010

In the 19th century, there used to be a condition called neurasthenia. People (usually women) would find themselves suddenly unable to function due to a host of inexplicable symptoms, often including fatigue, weakness, strange pains, dizziness and passing out. Doctors attributed the condition to a "weak nervous system," or neurasthenia. These women were often confined to their beds, where they would either recover or, eventually, die. And while nobody knew what caused this condition, at least everyone - doctors and laymen alike - took it seriously.

Today, many doctors shake their heads in wonder at stories like this. How could a condition such as neurasthenia simply disappear?

The answer: It hasn't. And while patients today who experience these same symptoms aren't given that quaint old diagnosis, often they don't get any diagnosis at all. They are all too often written off as having "anxiety," or some other form of, well, weakness of character, that absolves the doctor of having to try to do anything about their problem, or even to think about it very much.

At least in the 19th century, patients with dysautonomia were taken seriously, and were treated by their doctors with respect and sympathy.

Read here about dysautonomia, how to tell if you might have it, and what can be done about it.

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Well said Dr. Fogoros!

I'm a Fabulous Sugar Doll Blogger!

Special thanks to Miranda Powell for giving me the Fabulous Sugar Doll Blogger Award! I feel honored to be included in this award. Miranda also has a dysautonomia blog called "Dysautonomia: My Journey, My Battle, My Victory, My Life". She is able to keep upbeat while dealing with a disease as difficult as dysautonomia, and is an inspiration to many others. Keep up the great work Miranda!

In accepting this award, I agreed to list 10 things about me that you probably don't know.

1) I married my high school sweetheart. We have known each other since we were 12, and have been happily married for 10 years. He's the best! :)

2) I love horror movies. Even though they tend to screw with my heart rate, I can't resist them. Probably not the best idea, but sometimes you just need to do something fun!

3) I am fully obsessed with cupcakes. Although I very rarely allow myself to have them, they are my favorite!

4) I LOVE reading books...all kinds. My husband calls me a "book garbage disposal".

5) I taught myself to knit and crochet off of the Internet during my illness.

6) I really enjoy painting and drawing. I flip flopped between being and artist or a vet when I was younger. Now whenever I'm feeling up to it, I try to create some kind of artwork.

7) I like baking when I feel up to it (not so often I admit), but I try to make healthier versions so that I can feel a little less guilty (see number 3).

8) My dogs are my children. I love them to pieces!

9) I love the beach. I really think that I feel better when I am there. Whether it is the "ions" or just that I can relax there, who knows...but it's a great place to go. Hmmm, now I have to figure out when I can go there...

10) Someday I plan to have a big yard so that I can get GOATS. They are some of my favorite animals. My husband says he doesn't want them...but he will learn that he does!

So those are 10 things you didn't know about me! Now you're all going to go out and get a goat, right?

I also have the privilege of passing on this award to several other bloggers that I think are deserving.

Elisabeth at POTS and OI Recovery

Danielle at My Life with Ehlers-Danlos

Jane at Experience Janism

Michelle at Living with Bob (again)

The group at The Dysautonomia Connection (which does have multiple men associated with it, but I'm sure they won't be too offended to have a Sugar Doll award!)

Great blogs guys and gals!

Fall Risk!!

Okay, I just had to share this jewel with you guys... You know that you have problems when they make you wear one of these bracelets when you go to the doctor! Pretty funny.

Dysautonomia Tracker

Sorry for the delays in posting but, as you may have suspected, I have not been feeling well AT ALL. While I am not excited about that, I am excited about a new website that I have discovered that features a "dysautonomia tracker" that allows you to track all of your symptoms on a daily basis. And this is not your average symptom tracker...this one was obviously made by someone who knows something about dysautonomia. It has a huge range of symptoms to choose from that include things like pupil size, temperature problems, sleep quality, dizziness, fainting, headaches, muscle pain, stomach problems, and more. Very exciting! It has been useful to be able to see how my symptoms change on a semi-daily basis and how my activity changes as well (ie push-crash cycle). There is also a forum available, and multiple other trackers including sleep, pain, CFS, and many others. I think that it is something that many of you will find useful! Here is an example of the types of things that you can enter into your tracker (this is an excerpt of a tracker made by helpme5889). There is also a graph feature so that you can see how your activity level has changed over the month.