Saturday, October 20, 2012

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!

Tuesday, May 15, 2012

How to improve your toxic environment

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.

Friday, March 2, 2012

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. 

Tuesday, January 24, 2012

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.

    Tuesday, January 17, 2012

    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 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…

    To make you smile...


    Sweet boy

    Chloe Bear

    Chloe Bear
    Chloe as a baby!