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…