Thursday, December 11, 2008

Informative POTS video

Here's another great video that shows clearly what I was trying to explain a few weeks ago about the amount of heart rate increase involved in simply standing as a person with POTS. Very well done video. And the part with the dog at the end is one of the sweetest moments ever. :)

Wednesday, December 10, 2008

The Essential Chronic Christmas List

Wondering what to get your chronically ill friend or relative? Here's a list of items that I have found to be very useful over the years and would recommend to anyone with a chronic condition (especially, but not limited to, dysautonomia and POTS). So this is a list not just for gifts, but for general living everyday, all year. fyi, all the links are not to actual sites or products I have necessarily used, but they are similar to those that I have at home.

SmartWool socks: perfect for the winter for those of us with Raynaud's phenomenon or just cold feet in general. These are the only socks I have found that can keep your feet warm in almost any situation (although I must admit I have never warn them in the Arctic...)

Cute pillboxes
: None of us enjoys carrying loads of pills around with us wherever we go, but if it has to be done, it may as well be done with style!

Klean Kanteen Stainless Steel Water Bottles: Since we POTSies must have water with us at ALL times, why not carry a permanent water bottle with you instead of plastic?

Seat cane: I use one from Magellan's that is super lightweight and indispensable for me. A must for any time you are going to the grocery store or shopping or even going on a short walk outside so that you have an instant seat when your heart rate gets too high.

Extended Height Rolling Stool: I use mine every day in the kitchen. You really need to measure your countertops to make sure that you get one that rises high enough to be useful (mine is 30"). I use it anytime I am in the kitchen chopping, mixing or washing vegetables, and if I need to go to a different part of the kitchen, I can simply roll over there rather than walking.

Shower chair: not the most glamorous of items, but an absolute must for POTSies who have a risk of fainting and getting extremely dizzy in the shower.

Arthritis Gloves by Imak: Nice for when the joints in your fingers feel swollen and on fire. These are the best ones that I have tried.

Paisley Cotton Bandanas: I have to use these all the time to manage my temperature fluctuations associated with my ANS dysregulation. These help to cool you down fast and get your hair off of your neck when you are having a crazy hot flash for no reason. Really any scarf will do, these are just examples.

Personal fan: Great to carry in your purse in the summer so that any hot flashes can be stopped in their tracks. Or, keep on on your side table during the summer...there are actually some nice looking ones out there now from Vornado.

Support hose: can be helpful with blood pooling in the legs associated with POTS

Neck pillow: Very useful for the car or airplane to keep yourself more relaxed and less likely to have muscle spasms.

Knee braces: If you have hypermobile joints, knee braces can be essential for days when your knees are really acting up. Wrist and elbow braces can also be helpful.

Blood Pressure Monitor: This one is fairly accurate, syncs up to your computer, and is actually nice looking so you can keep it out.

Journal/ sketchbook: a nice journal (for the writing inclined) or sketchbook (for the artistic types) can be a great outlet for anyone with a chronic disease.

crocs Mammoth Clog:these are great to keep your toes nice and warm during the holidays. Super comfy.

Tinted glasses/ pale sunglasses: Very useful for photophobia associated with dysautonomia; it can be very helpful when in a store with fluorescent lights.

Medical books: Books about the conditions that we have can be really helpful in fine tuning our treatments, or even to find new ways of coping with our diseases. See the list on the lower right of my blog to see some of the books that I find helpful.

This is just a partial list of things that people disabled with chronic illnesses might enjoy receiving. Other great gifts include driving them to appointments, making meals for them, helping to run errands, etc. Anything thoughtful that you do will be very much appreciated by them.

I'm sure that I'll think of more things that would be useful for chronically ill people. I'll add more items in later posts as I think of them. Have a wonderful holiday season and I wish you all good health in the year to come!!

To make you smile...


Sweet boy

Chloe Bear

Chloe Bear
Chloe as a baby!