Sunday, October 25, 2015

A Stylus for All of Us!

I found a stylus (a pen for electronics for you older folks, wink wink) that is perfect for EDS hands.It's called the Cosmonaut.

The reason I like this one in particular (and I purchased many to try to find the perfect one), is that it is very fat and rubbery, so gripping it is much easier for those with EDS. Also, the tip doesn't have to pushed down very hard in order to work, unlike a lot of others that I tried where you had to force the tip down hard to make contact and use it. That tires out fingers and hands very quickly, and can even dislocate joints. 

Why a stylus instead of just using your fingers? Well, for me, it makes using my phone and Nook much easier. My fingers aren't as fatigued and I get more done. It's a win-win in my book. 

You can hold the stylus several different ways, whichever is easier on your own hands:

The proportions are just perfect for my hands...much easier than the skinny ones...

You can purchase the Cosmonaut directly from Amazon through my LifeWithEDS Store, just visit the shop! It's the cheapest I've found it on the web. 

Happy scribbling! 

Wednesday, October 21, 2015

May 2015 Art Show for EDS Awareness

This past May, 2015, I had an art show to raise awareness for Ehlers-Danlos Syndrome and Postural Tachycardia Syndrome, as well as to raise awareness for Medical Marijuana and its uses for the pain, nausea, and discomfort that Ehlers-Danlos Syndrome plagues us with. It was held during an art walk in Georgetown (South Seattle), Washington at The Bakeree, an upscale combo art gallery and Medical Marijuana dispensary. It was a huge success. The art remained up for a month, and patrons of the dispensary were brought to tears by the artwork, regularly, according to the gallery owner. The actual opening, during the art walk garnered $255 in donations, all which are being sent to the Ehlers-Danlos National Foundation's EDS Research and Treatment Center. I also got coverage in a local newspaper.

In addition to all of the artwork that I have already shown you, view-able here, I made one extra piece for the show and it turned out really well. I was very pleased with how everything went and how much money was raised to help support the life-saving research that is going on at the center.

I am hoping this May I will have another successful showing, but only time will tell. For now, here are some highlights of the night! Enjoy!

On a side note, I will soon be posting about EDS and Medical Marijuana, so stay tuned!


Mary Jane Had Less Pain at the Party

Acrylic on canvas, with parsley, oregano, and sequins.

People with Ehlers-Danlos Syndrome (EDS) often use many medications to manage moderate to severe pain, muscle spasms, and the anxiety and depression many deal with from having a chronic illness. “EDSers” can also have intracranial pressure, seizures, gastroparesis, headaches, migraines, insomnia, fatigue, and arthritis. Cannabis is now being used by some people with EDS to help combat the side effects of medications, like nausea and vomiting, or to replace traditional prescription
medications altogether.

Since moving to Washington State, I have started using medical cannabis, in addition to my prescription medications, mainly for managing my severe pain. I am on a lot of pain medications, and it also helps ease the nausea from taking those prescriptions. The pain medication I take does not take away all of the pain, it simply masks it a bit. Cannabis comes in and covers up even more of the pain that the medications aren’t touching. I also have anxiety and depression, muscle spasms, Bipolar Disorder, trouble sleeping, and I get headaches and migraines. Medical cannabis has helped me so much in combating all of these ailments.  I love Washington for its natural beauty, amazing people, and legalized medical cannabis. Especially after the drastic results I’ve experienced in treating my pain with medical cannabis, I could never live in a place where it was not legal.
Cascadia has won me over!

When I first tried cannabis, I had to sort through many strains to find the right one that worked for me; just like a psychiatrist tries and tries again until he treats depression with the correct medication for the person, each person responds differently to different strains of cannabis. For me, I eventually landed on my favorite strain, Very Berry Harlequin by Fire Bros. It isn’t a sales-pitch; I truly believe it was the right combination of CBD and THC, a CBD:THC ratio of 5:2, and the right terpenes for my system. As Leafly states, Harlequin’s big draw is its ability to relax without sedation, and to relieve without intoxication. For more info on THC vs. CBD, terpenes, and Very Berry Harlequin, ask anyone working at The Bakeree. They are the most knowledgeable staff I’ve ever met in the industry. I, personally, don’t like to feel “high”…I just like to feel less pain and less anxiety. This strain covers all of my symptoms, system-wide. It helps with everything. I am in awe of just how well cannabis helps EDS and how much it has changed my life.


Saturday, October 17, 2015

You Were Such a Pain in the Hips: Bursectomy 101

Since as far back as I can remember, I've had pain on the side of my hips. The pain was caused by bursitis, for which I had received many steroid injections to help reduce the inflammation. The injections were no longer working, and one can really only have so many injections in an area before you start to cause problems, so I thought I was out of options. Then a miracle happened. I recently had bilateral bursectomies (my right and left legs), and I've described the surgery in the video below.

Right after surgery:

Right leg

Left leg

A week after surgery:

Right side

Left side
For those of you that would like to watch a doctor performing this actual operation on another person, there is a 4 minute video below; it's graphic, but brilliant: