Sunday, May 16, 2010

Nevada EDS Awareness Month Update

Just wanted to share the amazing news for EDSers in the state of NV! I am holding the official hard copy of the Nevada May EDS Awareness Proclamation signed by Governor Jim Gibbons. :) What a joy!

Thursday, May 13, 2010

Disabled and Saying, "I Do!"

Happy day to all my fans! Woot! Hope you are having a low-pain day, or even...a NO-pain day! Wouldn't that be wonderful?!

                                           Offbeat Bride

Today, I am recovering from the lovely mess I did to myself at the beginning of the week. I decided to pop out my neck and upper back by towel-drying my hair after my shower. Haha! Yes, I am officially banning the twisted-towel-on-head look. My chiro and I decided it would be best for me to find a new fashion statement. I have been nursing the foot from the strain/sprain and the neck/back all week...and what better way to get my mind off all of it than to spend some time lapping up coffee, writing to all of you while sitting in the sunshine, and doing a post about...weddings?!

No, I am not getting married. Maybe one day, but not now. I have to say, for many years I had a bad taste in my mouth about the entire wedding thing. Part of this had to do with the fact that I am a young divorcée, happily so, and didn't ever see the point in marrying anyone else. I had a sour taste in my mouth from the first one. It wasn't right once, why would it be 'right' a second time? Also, and more importantly, why would I want to conform to societal/religious standards when I don't agree with them? I didn't want to even think about marriage, if I were to reconsider, until ALL couples, regardless of gender, were legally allowed to marry. I still have a lot of those feelings, but over the last couple of years, some of them have changed.

A couple years back, a friend was getting married and she wrote me a snippet about a wedding website that was a bit more off-the-wall than usual. I have no idea what sparked me to subscribe, but I have been an avid reader since then, even when I wasn't considering the thought of a wedding in my lifetime. Crazy! Since I have decided that I will be open to marriage, and in fact, am hoping to be married in my future, I love the ideas I snag from the site, including how open they are to alternative lifestyles, odd wedding attire, and disability-friendly weddings. Being disabled myself, this is extremely touching.

I still have a lot of the feelings I did before, and I still fight for equal rights for all and don't conform to a lot of 'traditional' and societal standards, but I also have to consider what is best for me personally, and for my health. With regard to health insurance, access to medical records, end-of-life decision making, etc., as someone who deals with chronic health issues, I feel it would be 'necessary' to be legally married in this country, when I find my life partner. I would want them to have full access to everything relating to my health, and vice versa.

With all of that said, I am not judging any of you for your beliefs or actions! Thanks for keeping an open mind and respecting my views as well! :)

Offbeat Bride, or OBB as it is candidly known to fans, has opened my eyes to a world of wedding possibilities! I wanted to share this in case any of you might be planning nuptials, just to show you that it isn't impossible to have an amazing disability-friendly wedding! Ariel Meadow Stallings has created a real treasure! For more info, please browse through the weddings below and then visit her site! She also has a book available for purchase here, at Amazon.

Rebekah and Shayne's Hospital Wedding:

 Photo by Conway Liao.
  • "Shayne was diagnosed with non-hodgkins lymphoma and we decided not to wait any longer. We got married in the hospital a week after we got the diagnosis...I could make sure [he] had continuous insurance..." (continue reading here)

Andy and Jeff's bright green, design-detailed wedding:
  • "I had a "Just Married" sign on the back of my wheelchair, and at the end of the aisle we had a pause and were able to enjoy each others company for a minute…" (continue reading here)

Fran and Siobhán's feminist,  disability-friendly, colourful, vegan wedding:

 Photo by Rob Bird.
  • "We met because of chronic health  problems, so planning a wedding left us even more exhausted than  normal.  We planned the day around this, sitting during the ceremony, with comfy seats with arms during the meal, sofas around the dancefloor, the whole venue was disability friendly.  We planned it from bed using  the laptop, and even had photos taken while we lay on the ground!..." (continue reading here)

If you liked these stories, OBB has a ton more! Check out the wedding goodies!

Love you all! Many years of love and bliss to those who are single and wedded, healthy and disabled!


Monday, May 10, 2010

A Perfect Prayer

"May you find serenity and tranquility in a world you may not always understand.

May the pain you have known, and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism. Always know that there are those whose love and understanding will always be there, even when you feel most alone.

May a kind word, a reassuring touch, and a warm smile be yours every day of your life, and may you give these gifts as well as receive them.

May the teachings of those you admire become part of you, so that you may call upon them. Remember, those whose lives you have touched, and who have touched yours are always a part of you, even if the encounters were less than you would have wished. It is the content of the encounter that is more important than its form.

May you not become too concerned with material matters, but instead place immeasurable value on the goodness in your heart. Find time in each day to see beauty and love in the world around you. Realize that what you feel you lack in one regard you may be more than compensated for in another.What you feel you lack in the present may become one of your strengths in the future.

May you see your future as one filled with promise and possibility. Learn to view everything as a worthwhile experience.

May you find enough inner strength to determine your own worth by yourself, and not be dependent on another's judgment of your accomplishments.

May you always feel loved."
                                                               ~Sandra Sturtz Hauss

 Hatteras, NC

Sunday, May 9, 2010

Bandages That Don't Rip My Skin!

Best discovery of the week! I finally found a bandage I can use! For you EDSers, I am sure you avoid tape and Bandaids like the plague. I certainly do. Well, now at least I will have some for small cuts and tears. Walgreens carries a 'Gentle' bandage that is really that. They are latex-free as well. Woohoo! The adhesive still itches a bit, but it doesn't make me break out in hives like some do. If I really need a bandage, I can deal with some mildly itchy skin, and it really isn't all that bad. It isn't a panacea, but it certainly doesn't hurt to have a real option for one of our troubling problems!

I have never found another one like this. I have seen a few other bandage products that were labeled as being gentle, or for sensitive skin, but that never means anything. I mean, paper tape rips my skin. This bandage doesn't seem to rip skin off, yet it does stay on my skin most of the time. Every so often, in a sweaty spot, it doesn't stick all that well. If I find that it might be a little too sticky to peel off at changing time, I just use a little soap and water as I take it off. All in all, I am thrilled to pieces with this product! :)

For larger areas that need to be bandaged, I opt for gauze wrapped all the way around the limb or joint, etc., and then I wrap the whole thing with an elastic bandage. This way, nothing is touching my skin except the gauze pads. And, of course, I always have a bottle of liquid bandage too. It just isn't like you can pop liquid bandage on to the bleeding blood draw site!

I have been keeping these gentle bandages in my house, in my car kit (the EDS kit I keep in the car for emergencies and the normal EDS issues), and I even keep a few in my wallet. This way, I am never without them, and if I pop in to get some blood tests I can bring my own bandage with me. I will never again worry about having the lovely thin skin on my inner elbow ripped completely off in the perfect shape of the paper tape the nurses try to use. Haha!

Oh - and here is another cool thing about these bandages: they are a cinch to put on, with their special packaging.

Take out of box.

Step 1: Peel Back at the #1 on wrapper.
The bandage stays attached to one side of the wrapper,
the backing stays attached to the other side.

Step 2: Press the wrapper with the attached bandage onto the wound.
Smooth it down. 

Step 3: Peel the wrapper off. Voila!

There are two sizes they sell, the small is here and the large here.

Hope this helps some of you! If you don't have a Walgreens nearby, you can order online from the links above.


Saturday, May 8, 2010

Coconut Water for POTS

Hello, fellow POTSy friends! This post is specifically for you, but can benefit everyone!

 Photo from a great coconut post on Rawmazing.

I am sure many of you have heard from your doctors, "Eat lots of salt, and drink some Gatorade!," or at least something along those lines. If you are like me, though, you don't mind doing the extra water and salt...but you don't want to fill your body with all of the high fructose corn syrup, artificial colors, and artificial flavors. And, the 'zero' sports drinks on the market are even worse...replace the HFCS with some more horrific chemicals and you have a toxic brew. Yikes!

I started looking for an alternative back when I was getting into the healthy lifestyle and fell in love with coconut water. I had actually tried it before, and enjoyed it, but I wasn't aware of the great health benefits - especially to those of us with POTS. I couldn't have found the more perfect natural sports drink!

The entire reason the doctors tell us to drink Gatorade is to replenish our fluids, our carbohydrates and our sodium. And, you can do all of this by drinking something in its natural form instead of the neon bottled drink...with the liquid found inside young Thai coconuts. A young coconut has mostly a clearish liquid inside, the goodness I am speaking of. As it matures, the liquid turns into the creamy white meat you probably think of when you hear the word 'coconut.' In order to reap this amazing 'liquid gold' you have to get the young coconuts. It isn't really gold, but you get the point! To get to the water, you can either open a young coconut yourself, pop in a reusable straw and guzzle away, or you can buy one of the several prepackaged coconut waters on the market. And, each glass of coconut water provides roughly the same benefits as Gatorade, au naturale!

RunTrails posted a great quote stating, "A friend of mine recently turned me onto coconut water as a refreshing post-exercise drink. The taste is sweet but subtle, but what really wowed me was reading the ingredient label. Coconut water naturally has 650 mg of potassium (15x more than a banana), 25mg of magnesium, and 35 mg of sodium! All of this in a 10 oz, 60 calorie package. It's like nature's Gatorade! After digging around some more, I found that coconut water is similar to plasma and was even given to soldiers in WWII intravenously when plasma supplies were low. Some doctors give it to kids with digestive problems, similar to Pedialyte, since the stomach accepts it so well."

There are a few brands out there that I have seen: Vita-Coco, O.N.E., and Zico. I usually grab the Vita-Coco or O.N.E. if they are available. They come in tetra-paks, and you can get individual sizes or a liter. The liter is normally way cheaper. Or, you can always do it the fun and fancy way, and just buy some young Thai coconuts at your local grocer. I find them at the Whole Foods in town, and Raley's sometimes carries them as well. The only problem with the coconut itself, is that it is really hard to get into. There's a great video demo here, but for an EDSer, I wouldn't recommend it. Instead, get someone else to do it, or just buy the prepackaged kinds. It isn't worth dislocations to get into a coconut!

Here's a SUPER video from my favorite raw foodies all about coconuts - what they look like, the varieties, the difference between large, small, green and brown, and even how to open them: 

Here is a comparison of Gatorade and Vita-Coco Coconut Water :

                     Gatorade (8 oz)                Coconut water (11 oz)

Calories          50mg                                     60mg
Potassium       30mg                                   660mg
Sodium         110mg                                     35mg
Sugars            14mg*                                   15mg**
                *High Fructose Corn Syrup     **Naturally Occurring Fructose
Calcium                  ?                                   5% DV
Magnesium             ?                                   9% DV
Manganese             ?                                 50% DV

As you can see, the sodium level isn't as high. If you have to keep it up, due to POTS, just add a tiny sprinkle of salt. I mean, it would be the tiniest sprinkling of salt to get your mg even with those in Gatorade. Or just add it to something you are eating. Or, like me, don't worry about it. The main thing, for me, is to keep really hydrated.

Now that summer is approaching and the POTS symptoms are sure to get worse with the heat, try reaching for a container of coconut water instead of the Gatorade or juice- and don't forget to drink plenty of good ol' H2O! :) Here's to our health - cheers!


(The usual disclaimer: This is only my opinion. I am not a doctor. Seek medical care if you need it. And, don't tell your doctors I said don't listen to them about the Gatorade...unless you want remind them about coconut water!)

Thursday, May 6, 2010

Smile at Someone

"The fact that I can plant a seed and it becomes a flower,
  share a bit of knowledge and it becomes another's,
  smile at someone and receive a smile in return,
  are to me continual spiritual exercises."
                                ~Leo Buscaglia

Seeds planted at Thomas Jefferson's Monticello, in Virginia,
blossoming along the walkways and inviting many folks to 
learn, engage, and take part in some of our oldest American history.

 Smiling at Michael Franti of Spearhead.
Michael smiles back at me. Feel the love!
Spread the love!

 Walking along the paths at Twin Oaks Intentional Community. A great place to become part of a simplistic lifestyle, learn about kindness, teamwork and compassion, from those who have been practicing them for many years; feel more connected to people who are on the same path as you.
A wonderful place to learn and grow.

Plant a seed.

Wednesday, May 5, 2010

Nevada Proclaims May as EDS Awareness Month!

I did it! Yippee! Although very unfortunate for her, the person I was dealing with in the Governor's office lives with chronic pain, so she was full of empathy for everyone living with EDS. She really helped me get this passed! I am so thankful for her and for the Silver State recognizing the importance of EDS awareness. :)

Love & Light!

Sunday, May 2, 2010

May is Ehlers-Danlos Awareness Month

Hi, everybody!

Happy Ehlers-Danlos Awarenss Month!!!

For those of you who don't have EDS, but want to donate to the cause anyway, there are links to donation forms. If you would be interested in helping my specific case and assisting me in paying for treatments, etc., there is a donate button on the homepage of the blog. You may make a secure donation via paypal or credit card. Any help you can provide would be greatly appreciated! I love you all so very much. Much joy and light to you! xo

For all of my EDS friends...I hope your May is starting off beautifully! If you don't already know, May is a great month to promote EDS awareness. Many ESDers across the world will be doing a variety of things to raise hope, funds, and enlightenment all in the name of Ehlers-Danlos Syndrome. What will you be doing to help?

Since I am pretty much laid-up, in pain and holed in my house with this foot injury, I don't have the time or body-function to do a fundraising gig at the moment (though I am planning something for later in the year). Instead, my goal has been to get the state of Nevada to actually pass a proclamation making it the 'official' EDS Awareness Month in NV. This would be a great opportunity to get the word out, possibly get press, and make it recognized here in the Silver State. This is on its way! The Governor's office has confirmed everything, and they are in the process of finalizing signatures and making it valid. I am supposed to be getting the authenticated document in the mail in the next couple of weeks, and I will post it up here when I do. From there, my goal will be to get local media outlets to cover the exciting announcement! Other things I will be doing to help this month include the usual blogging, spreading info on my social media pages (like Facebook), and spreading the word via email and such.

But...there are a TON of other things any one of you can do! I have included plenty of links to make it easier. Please find something - even if it is just calling a few friends and family members that don't know about EDS and telling them about it. Or bringing flyers to your doctor's office. Or even holding a bake sale or getting the kids to host a lemonade stand in the driveway to raise funds you can donate to EDS research (hopefully the non-animal testing kind!). It is YOUR month - get involved! :) Help raise awareness, bring about new treatments, and maybe even find some sort of a cure for this not-as-rare-as-most-people-think 'invisible' disease!

Click the links below to find info on EDS and how to help!

Ehlers-Danlos Network
  • Donate to Ehlers-Danlos Network Cares
  • EDS posters to pass around at schools, doctors' offices, etc.
  • Templates for letters to friends, docs, newspapers, etc.
  • Store to purchase EDS swag and promote awareness

EDNF (Ehlers-Danlos National Foundation)
  • Donate to EDNF
  • EDNF store to purchase swag, info on EDS, and emergency wallet cards, etc.
  • Become a member of EDNF to gain access to the forums

Fundraising Ideas for kids (donate profits to local families who are affected by EDS, or to a non-profit like EDS Network for research)

Find your local newspapers here, if you are interested in submitting an article, informing them about EDS, etc.

If you have any other ideas, feel free to post them in the comments section! I know a bunch of you EDSers have already told me about your great ideas and events you have planned - let's all share!

Good luck spreading the word on EDS and let's kick this 'invisible disease' into the mainstream! :)