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:


Tuesday, October 13, 2015

The Best Heating Pad on the Market

I have gone through a lot of heating pads, and I finally found the best one for me, and I hope it works well for you, too!

The BodyMed heating pad provides moist heat that penetrates very deep, without being wet or having to moisten a pad. It also goes up to 166 degrees Fahrenheit, so it is so nice and relaxing to lay on and works well for muscle spasms and stomach pains.

You can purchase the BodyMed heating pad in the Store. It's a little pricey, but it is so worth it. I have had it for a year and it still works as great as the day I got it.


Sunday, October 11, 2015

Update on Life and My Six Amazing Arm & Hand Surgeries

Hi EDSers, PoTSies, and those suffering from LPHS,

It's been about a year since my last post and I have been well. I am sorry it's been so long since I have written; it's been a whirlwind of a year, with a very major surgery for my Loin-Pain Hematuria Syndrome and a move to San Juan Island, Washington. I will write more about my surgery later. Today I just want to take a quick moment to thank each and every one of you who has written me during my absence to check on me, and let you all know that I am alright. My health is in a good place, considering everything I deal with; and, I also want to update you all on my beautifully done hand and arm surgeries.

I am thrilled with the work of Dr. William B. Ericson and my six arm and hand surgeries. To read more about them please visit my post:

Here are the updated photos of my minimal scarring. Looks great, eh?!

Dr. Ericson's contact info:

The Ericson Hand and Nerve Center
6100 219th Street SW, Ste 540
Mountlake Terrace, WA 98043
Phone: (425) 776-4444
Fax: (425) 272-2730
From EDNF:
Dr. Ericson is an award winning orthopedic hand surgeon with a special interest in painful conditions that do not show on standard diagnostic tests, including joint instability and peripheral nerve problems. He obtained his bachelor’s degree in Biochemistry from MIT with a thesis on collagen and elastin, and then graduated from Harvard Medical School. He is board certified in orthopedic surgery and hand surgery, and is in private practice in the Seattle area, with a large number of Ehlers Danlos Syndrome patients in his practice. He has developed a unique and highly successful approach to treating upper extremity pain and weakness in this patient population.

Dr. Ericson belongs over 20 specialty societies and is a Fellow of the American College of Surgeons, a Fellow of the American Academy of Orthopedic Surgeons, and a Fellow of the Association of Extremity Nerve Surgeons, who awarded him the Jules Tinel MD Award in 2009 for his work in this area. He was the Chief of Hand Surgery at Winchester Hospital, Winchester, MA from 1994 until 2005, and he is a past-President of the Massachusetts Orthopedic Association.