Monday, July 28, 2014

Giveaway: Silver Ring Splint

Hi, everyone! If you notice at the top of the site, there is a new tab for my artwork and the store is fully stocked with EDS and PoTS friendly items! :) 

I have decided to do a few giveaways...the first being the biggest! I am giving away a very gently used Silver Ring Splint for the thumb, originally made by Silver Ring Splint Company. It can be used for the left or right hand and is a size 8 1/2. Please make sure the size is alright before you enter the contest. You can use a ring sizer, make sure 8 1/2 will fit over your knuckle and not be too big. But, this will save you one hundred-ish dollars, so well worth your sizing efforts! This splint, in particular, guards your right lower (closer to your wrist) thumb joint. This joint is the one that goes out on me when I pick up a grocery bag, things like that that use grip.

The splits are wonderful, but I had surgery on my right hand to fix my thumb and so I don't need my right splint anymore (again, this can be used on right or left side). I will probably be having the surgery on my other side (and will post about the great surgery) so you might have a chance to win another splint in the future!

For those of you that would like to see the splint in action, here's a really old video of me demoing the splints:

In order to enter the contest, all you have to do is subscribe to the blog with your email in the upper right-hand corner of the page and comment below. You must subscribe and comment to be eligible. If you have already subscribed, let me know in the comment. I will randomly draw a winner on August 1st and announce it on the blog the same day. That's it. Easy and free.

Good luck!

Monday, July 21, 2014

IV Fluids for PoTS: Port Portacath Installed for Easy Access

I had been doing IV Saline for four months for Postural Tachycardia Syndrome (PoTS), and my nurse had been accessing me in my arms and hands with an IV needle. I was beginning to look like a heroin addict - track marks up and down my arms, bruising and scarring. It wasn't a pretty sight. It was also getting really hard for the nurse to access my veins because they kept rolling; they were blowing because of being accessed so much so we started talking about me getting a PICC line or a port. I opted for a port. It was the best decision ever. I love it beyond words. I shouldn't just say "it"...I should say her; I named my port Persephone. I have now been doing fluids for a year and a half and I am still happy with both the decision to do fluids and the decision to use a port.

Before I get into ports, I will explain my fluid situation. We were originally doing saline solution and it was nice, but we really amped it up when we switched to lactated ringer's. Lactated ringer's is a mix of sodium, chloride, lactate, potassium, and calcium; basically, it's like Gatorade in an IV bag without all the added yuckiness of actual Gatorade. It's an amazing mix of electrolytes. I do a litre of lactated ringer's each day through my port, 7 days a week.

The other thing that really helped: a pump. I was using an IV pole and gravity was doing the work, and even though I had the convenience of a port, I was still stuck for hours to a pole and it was cumbersome and a pain. When I moved to Seattle, the nursing company let me get a pump, which is an automated way to push the fluids through, and it's portable. Now, I can run fluids while sitting on the couch, or I can even run fluids while at the grocery store. It has made life so much better.

So...ports...let's just dive right in.

A port, or portacath, is a small device placed under the skin with a catheter attached that leads into a vein that goes directly into the heart. One can access this device with a needle and either take blood out through it or place fluids or medicines in through the port. If you get a port, I recommend asking your doctor to thread it under the clavicle and also to stitch it in place with an extra stitch as they tend to move around a bit in EDS patients, even though some doctors swear that is impossible (I know it's possible from a friend's experience). My doctor stitched it down in one extra spot and mine only wiggles a little bit.

On the day of my outpatient surgery (it was an easy surgical procedure):

There is a great 2 minute video explaining ports and how they are placed and used:

With my port, we keep it accessed 7 days a week so I can get my hydration daily. We change the "access" (the needle and dressing) once a week. I was trained to do it myself, so I am able, but I currently have a nurse doing it because I am still recovering from hand surgery.

When you aren't accessed, you see nothing more than a small bump under the skin. But, in order to receive fluids, you have to be accessed. That means you look more like this, with the dressing on:

There are a few downsides to having a port, and one of them is the allergies to adhesives. If you are like me, you are allergic to most adhesives. We have tried many, many different types of dressing covers and I've found this specific one to be the best, the Tegaderm I.V. Advanced. The other Tegaderm ones don't work for me, just this one does. It gives me the least irritation. Also, I have to use it with a "skin prep" - like an alcohol pad, but when you wipe the liquid on the skin it dries and provides a barrier between you and the adhesive. I highly recommend talking to your nurse about it, if and when you have a port. 

The other downside to having a port is not being able to shower while accessed. Some people I know only run fluids a few days a week, but for me, I am accessed 7 days a week, so I am stuck doing sponge baths, as my grandma calls them. It is a commitment, for sure, but for me it is very worth it. I wouldn't trade Persephone for the world. Yay for ports and fluids for PoTS! :) For me, the combo of Florinef (fludrocortisone) and lactated ringer's keeps my PoTS under control the best. I've tried all sorts of treatment options, but this is by far my favorite. I need the Florinef, but a while back we stopped the beta blocker (propranolol) and the Midodrine. I just use Florinef and fluids now, and I am happy as can be.

I saved the "best" for last...for those of you not afraid of blood and guts, here is a video of an actual port placement surgery, scalpels, needles, and all. It's pretty cool if you are into that sort of thing, like I am:

For those of you with a caffeine addiction, like me, you could just skip the saline or lactated ringer's, and just do straight-up coffee... ;)

No idea where this pic came from, but I love it!

What to do if you want to ask you doctor about fluids: see this post on talking to your doctor. Print out the info/documents I provided and bring it with you to show your doctor. Best wishes!

What to do if you are interested in a port, provided you've already talked to your doctor about fluids, or are already using fluids: show them proof. Print out my post and show them --- the proof lies in seeing it work with other people. If you have other friends that have ports, I also recommend getting them to write a short statement to bring to your doctor with you. I did, I brought 4 friends' statements along with a photo of each of them, with their port showing, to the doctor to show her what ports can do for us (provide easier access, long-term access, provide a way for you to move around while doing fluids, etc.), and that is what convinced her. Good luck!

Just one more tip for those of you with ports and portable pumps...turning the key to attach/detach the tubing can be rather difficult. A nickel fits in a lot of models really nicely, but can be hard on the hands. My wife came up with the idea of gluing some rubber cabinet liner to both sides of the nickel to create a grip on it and make it easier. So much better! Hope that helps you, too!

May the summer heat not keep you beat. 
Love and gentle hugs.

Monday, July 14, 2014

Fast, Fun, and Fabulous PoTSy Summer Drink Recipes

Hi, everyone! Hope your summer is off to a great start. I will be doing a lot of interesting posts in the upcoming weeks and months, some really exciting stuff ahead, so stay tuned... 

If you're all like me, PoTS hits hardest in the summer when the heat picks up. I am a big proponent of ample hydration and salt intake, along with getting plenty of other electrolytes, but the same-old stuff can get rather boring. I've spiced things up a bit and created some PoTSy-rific drinks to help stave off the summer heat and help with your flare-ups. Enjoy! (And, nope, I'm not a doctor, so this isn't medical advice.) These drinks are all very easy to whip up and contain lots of good stuff for those of us with PoTS and even EDS.

Some of the recipes contain fancy salts. You can buy flavored salts at Whole Foods or Trader Joe's, or other stores like those. If you can't get flavored salts or don't want to wait, just use the chunky sea salt you have at home.


  • Roughly 1 cup cold coconut water (I like VitaCoco brand)
  • 1/2 or 1 tsp agave nectar, to taste (I like to use raw agave, I use 1/2 tsp)
  • Juice of 1 lime
  • Ice
  • Large flake or chunk plain sea salt

Place salt on plate. Dip rim of glass in water. Place wet-rimmed glass into salt to coat edge of glass. Carefully pour lime juice and agave nectar into glass without removing salt. Mix until combined. Drop in handful of ice cubes. Top off "syrup" with coconut water. Mix with spoon. Garnish with lime (optional). Make sure to eat the salt on the rim as you drink the "margarita". Enjoy!

Why this recipe is awesome: It contains coconut water, which is hydrating and full of electrolytes --- great for PoTS, agave nectar instead of sugar or corn syrup (low on the glycemic index, so no sugar crashes), lime juice which is full of vitamin C and great for EDS, and salt which is important for PoTS.

Smoky Salted Watermelon Slush:

  • 1 cup seedless watermelon (or seeds removed, if needed)
  • 1 cup ice cubes
  • Juice 1/2 lime
  • 1/2-1 tsp smoked sea salt (I prefer 1 tsp, especially if it is smoked salt; important to give it that smoky flavor, but if you can't get, still good with regular salt. I do recommend trying to find some smoked salt though, if you are able. It is amazing on all sorts of things, especially in this recipe.)

Place all items in blender and blend just until smooth, but not too much that it melts everything. Drink up with a fat straw. It's like watermelon, meets tang, meets campfire...and it goes together very well. I know the drink sounds a little strange, but it is one of my favorites. Give it a try!

Why this recipe is awesome: This contains salt, which is important for PoTS patients, and also fluids to keep you hydrated. In addition, the vitamin C from the lime is great for EDS and the watermelon helps your body get rid of toxins. This is a great drink to start off the day with - especially from a detox standpoint.

ULTIMAte Elixir Slush:

  • 1 cup cold coconut water (I like VitaCoco brand)
  • 1 cup ice
  • Juice 1/2 lime
  • 1 packet or scoop of lemon flavored Ultima Replenisher (this amazing electrolyte drink I will be posting about soon can be purchased directly from Amazon via my Life with EDS store)
  • Bamboo jade sea salt (or regular sea salt if you don't have this)

Place salt on plate. Dip rim of glass in water. Place wet-rimmed glass into salt to coat edge of glass. Put the rest of the ingredients (everything but the salt) into a blender and blend until smooth; don't over-blend and melt it too much though. Pour into salt-rimmed glass and garnish with lime (optional). Enjoy! Make sure to eat the salt on the rim as you drink.

Why this recipe is awesome: This contains coconut water which is full of electrolytes --- great for PoTS, lime juice for vitamin C, salt which is important for PoTS, and Ultima, a potent, powerful mix of electrolytes that is like a super healthy "Gatorade". This is one serious slushie!

Bananarama Smoothie:

Note: You really have to like bananas to enjoy this drink.

  • 1 cup ice
  • 1 cup cold coconut water (I like VitaCoco brand)
  • Juice 1/2 lime
  • 1 banana

Place all items in blender and go to town. Pour into glass and enjoy.

Why this recipe is awesome: This contains coconut water, which has your electrolytes, and added potassium from the banana, along with vitamin C from the lime. 

In addition to adding some fun recipes to your routine, try getting more fluids in your body by adding a natural flavor-enhancer to your water. Either drop in some lemon, lime, cucumber, or fruits, or just drop an ounce of juice (like orange or apple) in a big mostly-full water bottle. It will give you a little flavor burst while still keeping you chugging down the pints. :)

Happy sipping!