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!